All Threads

The little girl who can never give her mum a kiss

Little Esme Hayes will never be able to give her mum a loving kiss on the cheek or blow out the candles on her birthday cake.

For the youngster has a rare condition called Polymicrogyria (PMG) which affects the brain, causing problems with speech and the muscles in her face.

It means she cannot perform the simple action of a peck on the cheek or scrunch her lips together to blow.

And her mum Sinead believes it is down to the fact that she was struck down with swine flu when she was pregnant with Esme, nine years ago, leaving her in a coma.

Sinead was left fighting for her life in December 2010 when she was 12 weeks pregnant.

She was in intensive care for nine weeks, and staff feared that both baby Esme and Sinead might not survive.

While she was in a coma, her dad Paul, who had also contracted the illness, sadly died on Christmas Day.

Miraculously, Sinead pulled through and gave birth to Esme the following June.

“When I left hospital after having Esme, I couldn’t sit up, or brush my teeth,” says the 39-year-old, from Sutton Coldfield.

“At the same time I was grieving for my dad.

“My husband John was very supportive but he had to go to work. I stayed with my mum a lot.”

At first, everything appeared to be OK, the Birmingham mum recalls.

“Esme seemed to be fine when she was born, and it wasn’t until her nine-month check that alarm bells started ringing,” she explains.

“She wasn’t able to sit up on her own and she kept her right hand in a fist.

“After various tests were done, it was confirmed she had PMG. They told us her brain had formed differently and instead of having deep folds, she had lots of folds in her brain, affecting her facial muscles.”

Esme has undergone tests to find out if the PMG was the result of genetic or other factors but they have come back blank.

There is no test to determine if it was a result of the swine flu, but Sinead and husband John are certain that is the case

“If a health professional I came into contact with had offered me the flu jab, things might well have been very different,” says Sinead, who is also mum to five-year-old Eloise.

“Esme would have been a healthy eight-year-old who would have gone to the local school, and been able to speak clearly.

“She would have been able to fling her arms around me, and give me a peck on the cheek.

“However, she now has to go to a special school and uses an aid to talk. She really tries to kiss but she just can’t do it.

“She’s never been able to blow out the candles on any of her birthday cakes. We have to help her blow them out, but she doesn’t seem realise she isn’t doing it.

“Esme just sticks out her tongue, like she does when she’s trying to kiss, and thinks she’s blowing them out.”

The little girl has been under the care of City Hospital’s Paediatric services over the years due to difficulties in hearing, another direct result of her condition.

“She is determined not to let it affect her,” says Sinead. “She is such a happy child and smiles a lot.

“Although she struggles with her speech, she wants to try her best to do everything she can.

“Her hands are not strong, but she can still swim and she loves to ride her bike. It’s been hard for her. Nobody wants to see their child suffer or life made difficult for them.”

Now, Sinead is urging people to get the flu jab, in a bid to not only protect themselves, but others they might come into contact with.

“It’s so important that clinicians coming into contact with patients are protected against the flu,” she explains. “I can’t stress that enough.

“I would hope that every midwife, doctor and nurse – or any other health worker – who came into contact with me throughout my pregnancy journey was vaccinated.

“I just hope that people reading my story who are thinking about not having the jab, will reconsider, because it could save lives or change a life.”


Dr Arvind Rajasekaran, Respiratory Consultant at Sandwell and West Birmingham NHS Trust, says: “Flu infection can lead to a very severe illness as we have learned from Sinead’s story, and in some cases can lead to loss of life. “There are many different types of flu and it’s important that those who are vulnerable within our society are immunised against it.

“Those who are pregnant, those aged over 65, or have certain lung or heart conditions are more likely to develop potentially serious complications of flu.

"Having the flu vaccine every year reduces the risk of such serious complications and protects the vulnerable people amongst us.”

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Teenager died after experimenting with friend’s dad’s medicine

A student died hours after taking morphine that belonged to his friend’s father, an inquest has heard. Louis Ciampoli-Messiou, 17, filmed himself taking the drugs in the early hours of Boxing Day 2018 shortly before passing out at a house in Bampton, Oxfordshire. His friend woke up at 5pm but was unable to wake Louis up and an ambulance was called but he was declared dead. A coroner heard that they had planned to take MDMA and cannabis together, but they found a brown bottle of liquid morphine which had been prescribed to his friend’s dad. Coroner Darren Salter said: ‘On Louis’s phone, there was evidence of recreational drug usage and a selfie video taken by Louis.

‘There is a selfie video on his phone at 4.32am in the early hours of the day he died. It is only around 15 seconds long but there is some footage of Louis. ‘He appears to be high and there is also, I think in the video, a bottle that can be seen with some liquid in it.’ When ambulance crews arrived, Louis was lying on his back on a bedroom floor and was not breathing. The business and tourism student had fatal levels of morphine in his blood and MDMA and cannabis were also present. Lisa Ciampoli-Messiou, Louis’ mother, told the inquest in Oxford: ‘Louis was a happy, nurturing and kind boy who had so many friends. He had friends from different areas of his life.

‘He was always a good boy, I miss him very much as does everyone who loved him.’ Acting Detective Inspector Ben Henley told the inquest: ‘We are unlikely to ever be 100 per cent sure what took place. ‘The only known witness to what took place that night is the friend. What is known is that during Christmas night, Louis and his friend took class A drugs. ‘They went to sleep in the bed at 3am to 4am. The friend woke up at around 5pm and tried to wake Louis but could not. He shouted for his dad and the father called an ambulance.’ No charges are being brought.

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Our hearts are broken' - Tributes pour in for schoolgirl (7) killed after being crushed by car

Tributes have poured in for a seven-year-old girl who died after a car accidentally rolled over her in Co Louth yesterday.

Primary school student Chantelle Keenan was playing with a group of children yesterday afternoon in Drogheda when the tragedy unfolded.

It is understood the vehicle, which was parked in the driveway of a relative’s home in Boyle O'Reilly Terrace, suddenly rolled back crushing the schoolgirl against a gate.

Neighbours in Chantelle’s family home in Rath Lodge, Ashbourne, Co Meath expressed their shock at the sudden tragedy.

“I can’t even begin to describe how upset I am at hearing this news,” said one local resident.

“I’ve often seen Chantelle playing outside with her two siblings; she seemed like such an outgoing and happy child.

“What happened is every parents worst nightmare. All anyone can do is offer their support and sympathies to her family.”

Heartbroken family members of the seven-year-old girl also took to Facebook to talk about their loss.

“I went In to see her in the hospital and I honestly haven’t stopped crying since,” said one relative.

“Poor child kicking and playing around in a paddling pool an hour before tragedy struck her… Why God? Why do this?

“Our hearts are broken. Please, I’m begging everybody to pray for my family. Poor Chantelle is gone but we still need your prayers.”

Another family member requested that people pray for Chantelle’s parents.

“Please pray for my nephew and niece John and Kathleen, who’s beautiful seven year old little girl died tragically today…

“They need strength, I just don’t know what we’re going to do,” she said.

Horrified relatives yesterday rushed the injured child inside the house.

An ambulance arrived from Our Lady of Lourdes Hospital, which is just across the road, and she was brought to the emergency department.

However, despite the best efforts of medical staff, she was later pronounced dead.

It is understood the child is not from the area and had been staying with relatives.

Gardaí confirmed they are treating the death as a "tragic accident" and their investigations are continuing.

It is understood that a number of children were playing close to the car when it began to move.

A number of Garda forensic investigators remained at the house last night taking photos of the accident scene.

A grey Ford Focus with the driver's side window smashed in was parked in the driveway.

Evidence markers were placed on the driveway where shattered glass lay scattered on the ground.

The house and a neighbouring house were cordoned off during the investigation.

It is understood a neighbour next door to the house witnessed the tragedy and was deeply shocked.

According to another neighbour, who did not want to be identified, a number of children were near the parked car with the car doors open when it suddenly rolled backwards.

It is understood the little girl, who was standing behind the car, was pinned against a gate at the entrance to the driveway when the car rolled back.

"The (car) doors were open and must have hit the girl,'" he said.

"I heard someone screaming and saw someone (who was walking past) jump over the wall," he said,

"I knew something was happening."

He said he saw a man, believed to be a relative of the girl, scoop her up in his arms and take her inside the house before putting her into a car.

An ambulance arrived in just over a minute from the nearby hospital.

Another neighbour who lives on the same road said she was out gardening when the tragedy struck.

"What a tragic, tragic end to a Sunday," she said.

"I'm a mother of three and have three grandchildren myself.

"It's so sad and it was just the start of the summer holidays," she said.

According to neighbours, the little girl doesn't live at the house but may have been visiting relatives. The family had just recently moved into the rented house and was not known by local residents.

Meanwhile, a woman in her mid-20s has died and a family of four were injured following a two-car collision.

The woman died at the scene when the car she was driving collided with another car on the Lea Road in Portarlington, Co Laois, at around 8.20am yesterday.

The driver and three passengers of the other car were a mother, father and their adult son (22) and daughter (26). Their injuries are not understood to be life-threatening.

They were treated separately at the Midlands Regional and Tallaght University hospitals.

The name of the victim has not been released. However, it is understood that she is not from the area.

The cause of the accident remains under investigation. The road was closed for a time yesterday as Garda forensic examiners studied the scene.

Local Portarlington councillor Tom Mulhall (FG) said the road where the accident occurred is a straight stretch of road.

While the cause of the accident remains under investigation, he urged all drivers to be more cautious on the road, especially in rural areas.

"I'd like to see people slowing down, especially on rural roads," he told he Irish Independent last night.

He also expressed his condolences to the family of the young woman who was killed as well as the injured family.

"It's terrible to see a young life taken like that," he said.

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Boy, 10, has surgery to remove a brain tumour after his mother, 40, blamed his persistent headaches on playing too much PlayStation

A 10-year-old boy was diagnosed with a brain tumour after his mother blamed his headaches on playing his PlayStation.

Lucca Larkin developed headaches in August, which his mother Shellie, 40, initially put down to an issue with his glasses.

After a trip to the optometrist came back clear, Mrs Larkin and her husband Simon, 46, banned Lucca from gaming, thinking that may be behind his symptoms.

With the pain still lingering, a GP diagnosed Lucca with blocked sinuses and recommended he take Calpol.

Sensing something was seriously wrong, Mrs Larkin took her son to A&E on August 30. A scan later revealed he had a medulloblastoma brain tumour.

Lucca, from Radcliffe in Greater Manchester, had surgery to remove part of the tumour on September 3. 

He is on a waiting list for chemo and radiotherapy to treat the rest of the mass, which was too dangerous to take out.

Despite Lucca seeing an optometrist and having his PlayStation taken away, the youngster was still battling intermittent headaches over the August bank holiday weekend.

His mother, who works part-time as a social media manager for a cycle wear company, took him to the GP.

The doctor dismissed his symptoms as nothing serious, and recommended he take anti-allergy tablets and Calpol.

When these failed to help, Mrs Larkin took Lucca to Fairfield General Hospital in Bury, Greater Manchester.

Later that day, the youngster was referred to North Manchester Hospital's children unit. A consultant booked Lucca in for a scan and he was monitored overnight.

After a sleepless night in lots of pain, a nurse pushed forward an appointment with a second consultant early the next morning, who arranged an immediate CT scan. 

A few hours later, the results showed Lucca had a brain tumour. He was diagnosed on August 31, just three weeks after his tenth birthday.  

'It's hard to describe the feeling you have when you hear the news that what you thought were sinus headaches or migraines is actually something much more sinister,' Mrs Larkin said.

'People use the term heartbroken but upon hearing the news I felt like my heart had broken into pieces. It was like a physical pain deep inside.

'I felt scared, terrified in fact. Later I felt an intense anger that this horrible disease even exists.

'As a parent it's the worst feeling, you feel like you've died inside. I knew there was nothing I was going to be able to do at that point to help him.' 

Once diagnosed, Lucca had an operation to remove the tumour at the Royal Manchester Children’s Hospital. 

He is on the waiting list for further treatment at the Christie Hospital in Manchester. 

The family are also awaiting the results of a lumbar puncture, which will assess whether his tumour spread to his spine. A lumbar puncture, or spinal tap, analyses the fluid that surrounds the brain and spinal cord. 

Lucca has also been put forward for proton beam therapy, a type of radiotherapy, in Germany. 

The family could be required to stay there for more than six weeks. 

Despite all he has endured, the youngster has managed to stay positive.   

'He's doing brilliantly,' Mrs Larkin said. 'He's still very upbeat.

'We have five children and we always thought Lucca was the softest but he was so strong during all of this. 

'He hasn't complained once or moaned about his situation.'

Lucca was diagnosed just two days after his father quit his job working in operations and planning for a utility company to start his own business.

His son's poor health means the new business will not go ahead, with Mr Larkin being on call to take Lucca to Germany when required. 

The couple have started a GoFundMe page to help them financially.  

Mrs Larkin is also speaking out to encourage other parents to trust their instincts.  

'If you know something isn't quite right, you have to follow it through,' she said.

'If I'd just left it and thought, "right okay, it is just a sinus infection, we'll go to the doctors' next week", we might not be in the same situation as we are now.

'Something was telling me deep in my gut something wasn't right, that there was something other than what they'd already said and that we had to push for it.'

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Thug, 23, caught on CCTV stabbing man to death after pub row is jailed

Horrific CCTV footage captured the chilling moment a killer brandishes a 'Rambo-style' in the street after a pub row - minutes before stabbing a man to death.

Carlton Donaldson, 23, was jailed for at least 23 years after he was found guilty of murdering Daniel Baird, 27, in Digbeth, Birmingham

Donaldson's friend Sashon Brown, 25, was also jailed for two-and-a-half years after he was convicted of violent disorder. 

Footage captured from The Forge Tavern showed Carlton Donaldson, aged 22 at the time, and his friend Brown getting into a heated argument with Dale Scott, a friend of Mr Baird.

Moment killer slashes at revelers before murdering young man

The footage showed Mr Scott stumble into a group, including Donaldson and Brown, after hitting a punch-bag machine in July 2017.

Brown, of Sutton Coldfield, pulled out a folding knife and flicked the blade in a threatening gesture to show Scott he was armed and ready to fight.

Carlton Donaldson then stepped in but the violence spilled onto the streets, where the men darted between a traffic-filled road in a dramatic chase.

The man who bumped into Brown, who was not named in court, was hit by a car and bounced off the bonnet and into the road. 

He got onto his feet and started to run moments after the heavy collision. 

Donaldson then pulled out a 'Rambo-knife', narrowly misses the target, before he fatally stabbed Mr Baird in the chest.

As well as murder, he was found guilty of wounding with intent, attempted wounding with intent, and violent disorder. The judge passed concurrent jail terms for the other offences.  

Dale Scott and Sean Spooner were cleared of possessing an offensive weapon and violent disorder. 

A member of the public gallery shouted abuse at Donaldson and Brown as they were led away following the trial at Birmingham Crown Court.

The court heard emotional statements from Mr Baird's loved ones, including his girlfriend Gemma Morris.

Miss Morris said her life had changed forever after her partner's brutal murder. She said: 'I should have been planning our wedding and not Dan's funeral.

'This has changed me as a person. I will never get over losing Dan.

'I do not know how to face my future without Dan.'

Mr Baird's sister, Kerry Sheehan, branded Donaldson a 'remorseless coward' who 'hunted down' the victim.

Ms Sheehan said: 'He would brighten up the room with his great smile. This has left us all traumatised. He was kind, caring and funny.

'He had his whole future ahead of him. He had simply gone out for a good time.'

The court was told Donaldson had a previous conviction for carrying a kitchen knife when he was 15. In July 2009, he was convicted of robbery and attempted robbery and given an eight-month sentence.

In 2016, Donaldson was sentenced for two counts of common assault, possession of cannabis and later convinced of assaulting a prison custody officer.  


Patrick Upward, mitigating for Donaldson, said his client had not gone out looking for violence and 'it all happened in a matter of seconds'.

He described the killer's own life as a 'tragedy' as he had been in care until the age of 11 and left school at 14.

Stephen Bailey, mitigating for Brown, said his client 'spontaneously' took a flick knife out in public and brandished it out of 'upset and frustration'. 

Judge Paul Farrer told Donaldson he used a 'Rambo-style' knife with 'murderous intent'.

The judge told him: 'Your use of a knife represents a significant aggravating feature. You chose to take possession of a significant knife.

'It was deployed with murderous intent in the course of a public disorder in which you played a leading role.

'The tragic death of Mr Baird has had a profound impact on his family and friends.'

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“It was so euphoric that I couldn’t help but cry” — Masao Meroe says of Ghana citizenship

Euphoric‘ doesn’t really convey the way I felt that evening. I’m not sure I can give you a replacement. The knowledge of the impending Citizenship Ceremony was a long time in coming… and for the past year seemingly elusive to the point of wondering if it would ever happen. The ‘process’ was not a real ‘process‘ whereby an application form, dates, schedules and information were never communicated (because they didn’t exist as the government ministries and agencies stunned through the event). I cried because of the long journey to get to that point, that moment of citizenship. I cried thinking back upon friends who helped me get here and not here to experience the ceremony which would have made them feel proud of this achievement. I cried thinking about all the people who would be proud of me of my becoming a Ghanaian citizen.

Masao Meroe (left) with his son Kofi and Kofi’s girlfriend, Athena (middle), in Hampstead Heath Park in London

These are the words of Masao Meroe on becoming a citizen of Ghana. His father is from Marshall, Texas in the United States (US) and his mother is Japanese. His parents met during the US occupation of Japan after WWII. He is an American born on a US military base in Japan where he spent the first 5 months of his life. He became a Ghanaian citizen in November 2019 and is the second person I am interviewing about leaving the US to settle in Ghana. discovered that Masao, an African-American, is the founder of Sankofa Investments (established 1994 in Ghana) under which he owns and operates Sankofa Beach House and formerly Sankofa Meroe Tours. A graduate of Brandeis University and the University of California, Berkeley, Masao holds a BA in Politics, a Masters in City and Regional Planning and a Juris Doctorate of Law.

He first visited Ghana in 1981 and almost four decades down the line, he stood in line on November 27, 2019, with others to take the oath of citizenship and became Ghanaian. “It was so Euphoric again that I couldn’t help but cry,” Mr. Meroe told during this chat.

Let’s go back to 1981 where all this started. Masao arrived at the University of Ghana for a short law school program that year. His fascination with Africa grew from that time on, it led to him traveling widely within the continent. So strong was the pull by Africa that in the year 2000 he moved his family to Accra, Ghana after living in Ibadan, Nigeria for five years with them.

As he talked more about his citizenship ceremony, Masao explained, “the swearing-in elevates your sense of belonging and instills a sense of responsibility for the growth, wellbeing, and security of this country because I am a part of it. I have embraced the country as my own. This is a feeling I never had in the US,” said Masao who has been traveling within Africa and organizing tours for more than three decades as a way of bringing to others the Africa experience.

My years of living and working in Africa have enabled me to establish relationships and contacts that afford groups and individuals access to people and places generally unreachable to tourists. Through my Sankofa Meroe Tours, I was able to tailor tour activities based on the specific interest for not just African-Americans, but persons and institutions of all kinds that wanted an authentic experience. While I just completed a small group tour last October, I’m now running away from this business as I’m trying to slow down the pace of life.

Before all this, he primarily worked in the US as a real estate development consultant on low and moderate-income housing development and community development projects in California and Ohio. He, however, grew up in Massachusetts after his four-month stint in Japan as an infant. He disclosed he has since returned to Japan once during his adult life.

Now that Masao is a full-blown Ghanaian, and will soon be a proud owner of a Ghanaian passport, how does that feel? “Well…” said the man who moved to Ghana and only retired in the last couple of years, “I’m a person who holds an American passport for convenience of travel. When I get my Ghana Passport, I’ll be a person who holds the Ghanaian passport for convenience of travel but mainly in West Africa and, more so the rest of Africa.

Mr. Meroe with wife Janet in a 2018 event flyer of theirs.

We moved with savings and lived off those for the first two years when we arrived in Ghana,” said the 64-year-old retiree, who is, well, not quite retired as he explained that “the Beach House is a ‘working retirement’ for me. Let’s just say he is “a correct man,” which is generally what the Japanese male name Masao means.

Before he became a citizen of Ghana, he had already committed half his life experience in Africa, seeing and experiencing more of Ghana than the average Ghanaian. Masao has also seen more of West Africa than the average West African and more of Africa than most Africans. “I, however, live in Ghana with no plans to leave or desire to live elsewhere. My citizenship does not change any of these feelings.”

Speaking of change, when asked Masao what he would love to change about Ghana if he could, without hesitation he responded: “The sense of protecting and appreciating the environment and cleanliness because I run a beach bed and breakfast. The sight of trash in the ocean is heartbreaking for me, and my dream is to see a cleaner Ghana soon in every sense of the word for everyone, especially the children.

My children are now in the US where they attended University, as much as my wife and I miss them, they are working there and also trying to make their way back home to Ghana which is home for all of us,” said Masao whose wife, Janet, was also vetted and approved for Ghanaian citizenship.

Watch out for my next conversation yet another African-America who became a citizen of Ghana and next time you are in Ghana do check out Sankofa Beach House — remember to tell them sent you. Also, visit to find out more and don’t forget to ask Masao about his favorite dish and drink from Ghana when you get the opportunity to meet him.

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Mother considers labeling son ‘nonbinary’ to keep his long hair

A mother in the UK is considering extreme measures to prevent her son from being kicked out of school over his prized hair.

Bonnie Miller, whose 8-year-old son Farouk James has more than 260,000 followers on Instagram, says she may declare the boy “nonbinary” just so he can keep his lush, waist-length locks while in school. Miller is putting schools on blast for the “outdated practice” of barring boys from having long hair, she tells the Daily Mail.

“Applying for a mixed[-sex] school, I may just put him down as non-binary,” says Miller, 41, who had been searching for the right school to place her son. “I have been trying to think of loopholes, and think how can I get him in.”

She claims the dress code, which is common among secondary schools in the UK, is sexist: “The mixed schools I have been looking at have policies which clearly differentiate between boys and girls.”

Miller has launched a petition asking Parliament to prohibit schools from enforcing the policy, which has nearly 1,000 signatures already. She also claims to have the children’s psychological well-being in mind: “I thought, ‘I have to do something about this, children’s mental health is more important.’ ”

“We are told we are supposed to be tolerant, and embrace diversity,” Miller, from Fulham, West London said. “However this policy teaches children that they cannot be different.”

She continues, “Why are we teaching — at such a young age — that long hair means there is something wrong with these children?”

Miller, a photographer, added that her son also has no interest in cutting his hair.

“Parents have shown me they have had to chop their child’s hair off, and the devastation it has caused,” she explained. “It’s a part of their identity. You are asking someone to take away a huge part of themselves, to fit into what is socially expected.”

Farouk has already traveled to cities such as New York and Florence, Italy, to showcase his enviable mane on behalf of children’s fashion brands such as Guess.

“Farouk globally can be himself, and be appreciated for who he is through Instagram,” says the mom-of-three. “But locally he is not accepted.”

According to Miller, strangers have mistaken her son for a girl, but Farouk is unfazed by the gaffe.

The young model was just 2 years old when his mother set up an Instagram for him, after another Instagram influencer allegedly used his image without their permission. Now, Miller and Farouk take great pains to preserve his curly coiffure, including washing with Evian mineral water.

“He’s become a role model for children, for boys with long hair,” said the mom-of-three, who also runs the Instagram account @BadMotherBlogger with some 10,500 followers. “Parents say they refer to Farouk’s page to give their child confidence.”

She says, “I’ve cried numerous times because, just from me allowing him to be himself, he has changed other children’s lives.”

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Baby boy has life-saving surgery to give him a cow's heart valve

A baby boy has been given a heart valve taken from a cow in a life-saving operation. Bradley Harrison was in surgery for nine hours, during which his heart was stopped for six hours. His mum said she felt ‘sick’ when she first heard he needed part of the cow’s heart, but is now overjoyed that he is doing well. Amber Griffiths said she was offered an abortion at 24 weeks pregnant when doctors diagnosed him with five heart defects that meant he might not have survived the pregnancy.

She refused, and his life was saved with the bovine transplant when he was five-and-a-half months old. Now ten months, he has recovered well and is thought to be one of only a small number of babies given the pioneering treatment on the NHS.

He was able to enjoy his first Christmas and New Year with brothers Riley, three, and Lucas, two. Amber, 24, said: ‘At first I felt sick hearing that Bradley was going to have part of an animal put in him, but his chances of survival with the calf valve were high and it ended up saving his life. ‘We are all over the moon that he’s now doing so well.’ Amber and fiance Ryan Harrison, 24, were stunned to discover that they were expecting a third baby in June 2018. It was during her routine 20-week scan that Amber was told the baby had congenital heart disease.

She was given the devastating news that he had pulmonary atresia – where the pulmonary valve, which regulates blood flow from the right ventricle to the lungs, does not form properly. ‘I knew something was wrong, I could feel it,’ Amber said. ‘The sonographer wouldn’t look at me in the face. ‘They told me there was a risk he wouldn’t make it to the end of the pregnancy, I could go into preterm labour and that he won’t breathe when he’s born.’ The mum-of-three decided to keep her son, even though her pregnancy left her bed bound and unable to look after her other boys. She also had a traumatic labour on Valentine’s Day after her placenta failed, which lead to her being put under anesthesia while Bradley was delivered via emergency C-Section.

After Bradley was born weighing 6lbs 2oz at the Royal Victoria Infirmary in Newcastle upon Tyne, he was immediately taken to Freeman Hospital where Amber rushed to his side when she was discharged after 24 hours. Bradley was given a CT scan not long after birth where his parents were also told he had the heart condition Tetralogy of Fallot – four defects which limit the amount of oxygen carried by the blood. Following a heart and lung reconstruction nine days after he was born, Amber and Ryan thought their son’s health problems were over. He needed a new heart valve and was fitted with a plastic one. But despite the nine-hour op, the little boy’s issues had only just begun. Four months after his first operation, Amber panicked when Bradley started to turn blue when he cried.

Amber, of South Shields, said: ‘We rushed him to hospital, where they said his heart was starving his lungs of oxygen.’ The miracle baby underwent open heart surgery when he was five and a half months old, and had the life-saving bovine transplant, which saw tissue taken from a calf and used to repair Bradley’s valve. His heart was stopped for six hours while doctors operated and he needed four pints of blood. Bradley has been left with a large, vertical scar running down the centre of his chest from his open heart surgery. Amber said: ‘Bradley has been through so much in his life already. He’s such a fighter, there was no question about me not continuing with the pregnancy, I knew he would survive.” He already has his next open heart surgery planned for when he is two and a half years old, as his artificial valve needs to be replaced as he grows.

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Piccadilly Gardens stabbing spree 'was targeted attack on four homeless men', says victim left with 18 stitches

All four victims of a stabbing spree in Piccadilly Gardens were homeless men, one of the victims has said.

Tommy Dennison, 52, claimed in an interview with the Manchester Evening News this morning that he was drinking a cup of coffee outside Primark when a man came up and slashed him across the face with a lock-knife without saying a word.

The offender then stabbed another homeless man sat just metres away.

"He was outside Nero's where the bin is," said Tommy.

"I heard him screaming so I went over to help him.

"I tried to calm him down, he'd been stabbed twice, in the back and shoulder.

"Then I heard more screaming, from the other side of the street.

"There was a commotion, all these people were in the street, phoning police.

"Officers came from everywhere, it was a sea of blue."

Tommy says both the other two victims were also homeless men.

"One has a scar near his eye," he said.

"I saw him in hospital, his face was bad.

"The other guy has 180 stitches.

"[The attacker] was targeting the homeless, he didn't say anything, he just walked up and slashed me."

Although Tommy has had substance abuse problems and lived on the streets for many years, he has recently found accommodation.

He is now recovering at home after having 18 stitches to his face in hospital last night.

"It's sore but I'm OK," he said.

"Everybody will be worried out there.

"I'm off the streets now, I'm trying to turn my life around.

"There's some right evil out there.

"But Manchester is a safe place, it's just now and again there are some incidents."

Greater Manchester Police continues to investigate the stabbing incident and a 30-year-old man is in custody.

City centre spokesman for Manchester Council Pat Karney said on Twitter this morning: "Incident last night was a rough sleeper feuding with other rough sleepers."

Officers confirmed Taser was deployed as he was arrested on suspicion of serious assault at the scene on Market Street.

Eyewitness Mitchell Jemmeh was walking towards Market Street when he saw the incident unfolding in front of him last night.

He told the M.E.N.: "A homeless man was surrounded, he was screaming.

"At first sight I thought it was over money or he was on drugs, then a group of lads shouted to the people surrounding the homeless man: ‘he’s on the tram, he’s here’.

"Everybody on the tram got off leaving this one male on his own on the tram. He was cornered on the end carriage of the tram.

"Then two female PCSOs came running over being cautious telling the surrounding crowd to back off."

"Two or three plain clothes police officers then detained him, he was struggling trying to resist. He was then tasered and taken to the ground.

"As this is happening two other males appear to be stabbed, one was next to the first homeless man.

"He had a wound to the face and was bleeding from the face. The other was on the other side of the tram stop at a bin."

Greater Manchester Police said in a statement last night: " Shortly before 6.20pm this evening, police were called to reports that two people had been stabbed on Market Street.

"Officers attended and a 30-year-old man has been arrested on suspicion of serious assault – a taser was deployed during the arrest.

"Four people have been injured and one has been taken to hospital for treatment.

"This is being treated as an isolated incident and there is not believed to be any wider threat to the public

"Anyone who witnessed the incident or has footage or information is urged to contact police.

"Anyone with information should call police on 101 quoting incident number 2353 of 12/01/2020, or the independent charity Crimestoppers, anonymously, on 0800 555 111."

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Stab victim reveals injuries after whiskey and cocaine-fuelled attack

A man has revealed his horrific wounds after he was stabbed in the stomach with a steak knife at a party because he had ordered a taxi home. 

Adam Robertson from Walker, Newcastle, was partying in a Quayside flat in the city when he decided and order a taxi home at 4.30am. 

Yet his friend, Nathan Andrewartha, 22, 'seemed to take offence' at Mr Robertson's decision to go home and flew into a cocaine and whiskey-fuelled rage inside the Dream Apartment on City Road.

Drenched in his own blood, Mr Robertson was left lying on a bed and feared he may die after the attack which could have easily ended in a murder charge, a judge ruled. 

Andrewartha, of Scrogg Road, Walker, was arrested and initially charged

But prosecutors accepted his guilty plea to the lesser offence of unlawful wounding and wept as he was jailed for two years last week.

Recorder Jonathan Aitken told him that his actions could have seen him spend life behind bars. 

Mr Robertson said his attacker 'deserves' to behind bars and has revealed graphic pictures of his blood-stained t-shirt just moment after the attack on March 23 last year.

'I was in hospital for weeks because of what he did to me, and the doctors were worried I might not pull through,' he said.

'I've even lost my job because of what he did - he's just a scumbag.' 

Newcastle Crown Court heard earlier that night, Andrewartha had been 'showing off and bragging' about what he had done to other people.

With the steak knife tucked down his trousers, he threatened to stab a work colleague's boyfriend who had mistreated her.

Adam added: 'He was going around all night acting like an idiot, saying he was scared of nobody.

'I'll always remember him standing in the middle of the room with a bottle of Famous Grouse whisky, drinking it straight from the bottle.

'I ran at him and he ran at me but as we met, he stabbed me right in the belly and slashed me all over,' said Mr Robertson.

'I then got him in a headlock and he was trying to stab me even more but my friend took the knife off him.

'I looked him straight in the eye and said 'You've stabbed me'.

'He just went 'Aye, I know I have' and then he started crying.'

As he bled out, Mr Robertson claims Andrewartha, realising the seriousness of what he had done, begged those present not to contact the police before leaving and going home.

Mr Robertson was taken to hospital, where he had a 3.9ins wound behind his ear and a puncture wound to his abdomen.

And that night, his family kept a vigil at his bedside in the Royal Victoria Infirmary in Newcastle where he was treated.

Recorder Jonathan Aitken said: 'I have to sentence you for unlawful wounding on a person who used to be your friend when, in a drink and drug-fuelled state and not thinking correctly, you took umbrage at him due to some imagined slight because of the way you were intoxicated.

'You attacked him, he thought he had been punched but in fact you had a knife in your hand and that inflicted a very serious injury.

'It could so very easily have ended his life and yours as well, to all intents and purposes, because you would have got life imprisonment.' 

The court heard how Mr Robertson's injuries left him unable to work and he lost his job as a result.

Mr Robertson said he is also now cautious when out in public and spends most of his time at home.

'What he did left me really deflated,' he said.

'For me, what happened since was all about rebuilding my confidence as I've always been in work so he has robbed me of that.'

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Teen lucky to be alive after croc attacks turtle

A Townsville teenager who jumped into the sea to save a struggling turtle has had the shock of his life after the struggling animal was eaten by a crocodile that crept up on them.

Coree Summerville, 15, escaped unscathed after his kind-hearted rescue attempt took a dramatic turn at The Strand pier on Townsville's foreshore.

He'd been fishing there on Saturday when he noticed the turtle struggling and belly up in the water.

After about 20 minutes it floated ashore and we went down onto the beach and saw that it was a turtle struggling to swim," Coree told 9News.

What he didn't realise was that a croc was watching.

After the teen hit the water, the reptile struck, biting the turtle Coree was holding.

"The croc came out of nowhere and just took a chunk of it," said Coree.

"I just dropped the turtle, ran, I was freaking out."

The teenager said he and his friends rang the HQ Aquarium Turtle Hospital after the attack.

"I then jumped back in the water and swam this turtle to shore," said Coree.

"I was pretty scared – if that croc had missed the turtle it could've got me."

Swimming enclosures on The Strand esplanade were closed after the drama, with the croc to be targeted for removal if authorities can find it.

Croc sightings are relatively common in the Townsville area with dozens reported last year.

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Mother, 19, who was diagnosed with untreatable brain cancer months before giving birth dies after 16-month battle to fight the tumor

A 19-year-old who was diagnosed with an incurable brain tumor months before giving birth has died after more than a year of battling to find a cure.  

Dana Scatton, of Pennsylvania, was seven months pregnant in December 2017 when a brain scan revealed she had diffuse intrinsic pontine glioma (DIPG).

It is one of the most devastating cancers, which affects 300 children a year, most of whom are under 10 years old. No one has survived with DIPG for longer than 18 months, and it does not respond to any treatment. 

Despite some recent efforts to test moonshot treatments for DIPG in clinical trials, researchers have long struggled to find any glimmers of progress - and have therefore struggled to get funding to keep trying.  

Dana delivered her daughter, Aries Marie, a month early on January 4, 2018, before starting radiation treatment, and traveling to a clinic in Mexico, which promotes a 'cure' for DIPG, though they have not succeeded and doctors accuse the clinic of preying on vulnerable families. 

There were moments of hope and progress, but this week, on Easter Monday, her family told well-wishers Dana had passed away.   

We may never have the right things to say to truly honor the amazing, smart, loving, caring, passionate, incredibly beautiful and free spirited mother, daughter, niece, sister, cousin, friend and independent woman Dana was every day,' the family wrote on Facebook. 

'She inspired us all to be better than who we are and to keep God in our focus at every moment. She faced the greatest fear of all, death, and smiled back with a grin only God can instill. She fought harder than the toughest warriors known to man and did it with grace and valor.'

DIPG tumors usually start in the brain stem, the part of the organ that's located just above the back of the neck and connected to the spine. It controls breathing, nerves and muscles that help people see, hear, walk, talk and eat.

There is no known cure for the disease and scant treatment options due to lack of funding for research. 

It is a vicious cycle: organizations are reluctant to fund research into something that seems so untreatable; most funding into child cancers goes to leukemia, which is the most researched child cancer. 

Without funding and research, it will remain mysterious - and in turn, it will remain difficult for researchers to get funding to dispel the mystery.

Due to the tumor's location in Dana's brain, it started taking over her motor functions - making it more difficult for her to walk, talk and breathe.

At points, MRI scans suggested that the radiation treatments were shrinking the tumor, 'with no signs of blocking her pons,' the part of the brain involved in the control of breathing, communication and balance. 

According to the National Cancer Institute, clinical trials have shown that traditional chemotherapy aren't effective. 

As a result, many parents of DIPG patients from all over the world have turned to the controversial Dr Alberto Siller, who has a dubious clinic located in Monterrey, Mexico, as a last resort. 

The highly controversial treatment, with no evidence of success, involves an untested mix of 11 chemotherapy drugs, injected into an artery in the brainstem that costs $300,000, reported Science Based Medicine

But doctors who run the clinic have not performed any clinical trials, peer-reviewed studies or published survival and recurrence statistics. 

A family from Rogers, Arkansas flew to Monterrey, Mexico in July 2017 for their daughter Addy Sooter, three, who was diagnosed with DIPG, to receive experimental chemotherapy treatment at Dr Siller's 0-19 Clinic.

In September 2017, an Australian family traveled to Monterrey in hopes of a last-ditch treatment for their then-four-year-old daughter Annabelle Nguyen, who was diagnosed with DIPG when she was two years old. 

A year ago, Annabelle's family said the five-year-old had 'no evidence of disease,' a term used when scans and tests can't find cancer in a person who has been treated for the illness. 

But that apparent progress did not last. Both girls since passed away, dealing a blow to parents desperate for answers. 

There are now highly-anticipated clinical trials in Australia, the UK and the US. They have reached out to Clinica 0-19 to collaborate or review their work, but the clinic has refused. 

Dana, the youngest of nine children, told in December 2017 that right before she was diagnosed she started to experience difficulty speaking, which had become strenuous.

'I noticed that it took me a little to swallow, then walking got harder and it was even hard to speak,' Dana said.  

She said things got worse in the beginning of December when she went to catch the bus to take her to school and her legs began to feel limp, leaving her too unable to walk properly.  

At first Dana thought it could just be stress from the pregnancy and school.

'I thought it could be the way the baby was sitting on nerves,' she added.

Less than two weeks after her initial symptoms, Dana told her doctor what she was experiencing during a routine visit to check on the baby.

She was in the emergency room the next day where she underwent a cat scan and MRI that found a large tumor on the base of her brain.

Within hours of the MRI doctors delivered the diagnosis and prognosis. 

Dana said the first thing that went through her mind when she heard the diagnosis was: 'Is my baby going to be okay?'

Both Lenore and Dana's father Robert took time off of their jobs at Amazon and a YMCA to take care of their daughter full-time. 

The support from family and friends has been overwhelming and Lenore said that since Dana's brother JJ took to Facebook and made a GoFundMe for medical expenses, people from around the world including Ukraine and Germany have reached out to send their prayers and support. 

Dana said: 'I just want to be a wonderful mother.'

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Mother reveals how she nicknamed her daughter, 6, 'Little Miss Bump' because she was a 'clumsy kid' before discovering that a BRAIN TUMOUR was causing her to fall over

A mother has revealed how her daughter who she thought was just incredibly clumsy was actually suffering from a brain tumour - and that falling out of bed may have saved her life.    

Shelley Dunlop, 30, from Dorset, told how she gave up on trying to teach her daughter Annabelle Ginn, now seven, who was nicknamed 'Little Miss Bump,' how to ride a bike as she kept toppling off it.

'We did our best to get her on a bike but we got nowhere as her balance was just so bad,' she explained. 'She couldn't even ride a scooter without falling off so we gave up on both.

'And from as long as I can remember, Annabelle has been incredibly clumsy. She was always tripping – she'd manage to stumble over nothing on a flat floor.'

She continued: 'It got worse when she started school and she'd come home with an accident form most days.

'One teacher nicknamed her Little Miss Bump and another suggested we get her tested for dyspraxia, which was on my to-do list.

'She's always been a bubbly, chatty, happy little girl and we didn't think anything of it – we just thought she was a clumsy kid.'

But after Annabelle, who was six at the time, fell out of her cabin bed and three days later started suffering excruciating headaches and vomiting, a scan revealed a tennis-ball sized brain tumour.

Doctors told the shocked mother that it had probably been growing for years and was the cause of Annabelle's balance problems.

They said that falling out of bed had probably caused fluid on her brain to build up, which triggered the headaches and sickness. 

'Thank goodness Annabelle fell out of bed – I'm convinced it saved her life as it led to her diagnosis,' said Shelley, who works as a health care assistant.

'You hear the words, "your child has a brain tumour" and you just can't take it in.

'It was surreal and I couldn't register this was happening to my little girl – it felt like I was watching a TV show.

'All the time we'd thought she was just clumsy, she was walking around with a ticking time bomb inside her head.'

After a 10-hour operation to remove the tumour, Annabelle was in hospital for a month as she had to relearn how to walk and talk again.

Eight months on, she has been left with weakness on her left side and impaired vision in her left eye, but is back at school full-time.

Now, Shelley is planning to give Annabelle 'the best Christmas ever' and 'counts her blessings' that she is doing so well.

She is sharing their story through The Brain Tumour Charity to support its HeadSmart campaign to raise awareness of children's brain tumour symptoms and reduce diagnosis time.

'We didn't have a clue that poor balance was a possible symptom of a brain tumour,' explained Shelley.

'If we had, Annabelle would probably have been diagnosed earlier and her tumour wouldn't have grown so big and caused as much damage.' 

The family's nightmare started on April 9 when Shelley and her partner Troy, 31, were downstairs when they head a crash from Annabelle's bedroom around 7pm.

'We ran into Annabelle's room and she was on the floor holding her head,' explained Shelley. 'She said she'd hit it when she fell out of bed trying to shut her blinds.

'We checked her over for bumps and cuts and she said she was OK, so I gave her a cuddle and tucked her back in bed.'

The next day, Annabelle seemed fine but three days later, she woke up with a headache and got sick.

After taking her to the GP, Shelley was told it was most likely due to bruising from the fall and was sent away.

But the following morning, Annabelle woke up with a headache and vomited again, so her concerned mother took her to The Royal Bournemouth Hospital where she works.

'She was under observation and a doctor said she had concussion and was going to send her home with Calpol,' she explained. 'Then Annabelle had a headache and they saw for themselves how much pain she was in.'

Doctors decided Annabelle needed a CT scan and sent her to Poole Hospital, which has a paediatric unit - and five hours later she was taken for a scan.

'By then, I was by myself as Troy had to go back to work,' recalled Shelley. 'As soon as a nurse asked me to go into another room, I knew something was seriously wrong. Doctors told me that Annabelle had a large tumour near her brain stem.'

They said she had to be transferred immediately to University Southampton Hospital's paediatric neurology department for a more detailed MRI scan. 

'I'd been convinced they were going to say she had concussion and send me home with an information leaflet – not turn our world upside down in seconds.

'I had so many questions racing through my mind that I was scared to ask, but I made myself ask: "Is she going to die?" 'I was terrified.'

Shelley rang Annabelle's dad, her ex-partner, Alfie, to break the news and he met her to travel in the ambulance with their little girl to Southampton.

'I was in tears while Annabelle wolfed down a packet of crisps as she hadn't had any dinner,' said Shelley. 'She looked fine so I couldn't take it in she had a brain tumour.

'When she asked, "Mummy, why are you crying?" I told her I'd stubbed my toe.'

The next day, Annabelle's MRI confirmed that she had a brain tumour.

'I felt sick when we saw the scan and the lump a size of a tennis ball in my little girl's brain,' said Shelley.

The next morning, Annabelle had 10-hour surgery and Shelley went down to theatre with her.

'Watching her being put to sleep on the table knowing she might not make it or not wake up the little girl I knew was the hardest thing I've ever done,' she said. 'It felt like an eternity.'

Finally, she was told Annabelle was in recovery in the intensive care unit.

'She had wires everywhere, including a drain allowing fluid to drain from her brain,' said Shelley.

And she suffered another devastating blow when doctors explained Annabelle had posteria fossa syndrome - a condition sometimes caused after surgery to the cerebellum - causing paralysis down the left side of her body. 

'She couldn't move, speak or swallow for five days,' said Shelley. 'Her dad and I hardly left her side.'

'Our six-year-old had reverted to a new born state and had to have a feeding tube. To start with, all she did was cry or throw up.

'It broke my heart to see my giggly little chatterbox just sitting there with a blank look on her face and no expression in her eyes. She looked empty.'

Another MRI scan showed surgeons had removed most of the tumour, while biopsy results later revealed it was a grade one (non-cancerous) pilocytic astrocytoma .

'We were so relieved Annabelle's tumour wasn't cancerous and felt like we'd won an unlucky lottery,' said Shelley. 

Back on the ward, Annabelle started her rehabilitation. 

Shelley communicated with her using a thumbs up or thumbs down, and the little girl's condition improved slowly thanks to physio and occupational therapists.

Annabelle's first achievement was being able to roll over by herself, then sit up with help, itch her nose and sit up on her own. Poignantly, she had to go through all her 'firsts' again.

'Annabelle had to relearn her first steps, first words and first time using the toilet,' said Shelley. 

'It's something no parent should ever have to go through.'

But there were some precious 'firsts' too.

'The first time she said "I love you, Mummy" again was incredible and so emotional,' explained Shelley. 'And another magical moment was when she was able to smile again.

Of course what Annabelle remembers most is being able to eat again when we took her out in a wheelchair for her favourite Subway lunch.'

Back at home, Annabelle – who now has scans every six months - went back to school part-time in June and was full-time by September.

'She still wears a patch to correct double vision in her left eye caused by nerve damage in surgery,' explained Shelley. 'We take her wheelchair most places as she still gets very tired.'

'Annabelle is more introverted and not as laid back as she was before surgery. She's still having physio and seeing a psychiatrist, but considering everything she's been through, she's doing brilliantly.'

'We're slowly but surely getting back our feisty little girl who loves Netflix, playing chess and her puppy Evee.

'And we're going to give her the best Christmas ever and have planned trips to Winter Wonderland and Disney on Ice in London – I can't wait to see her face light up.'

Now Shelley cherishes every second with her daughter.

'We're among the lucky ones as Annabelle's future looks hopeful,' she explained. 'I am so proud of her and every day I count my blessings we've got her.'

Sarah Lindsell, The Brain Tumour Charity's chief executive, commented: 'We are so sorry Annabelle and her family have been through such an ordeal.

'And we are incredibly grateful to Shelly for sharing her gorgeous little girl's story to help us raise awareness about our HeadSmart campaign.

'Annabelle's experience highlights how symptoms like balance problems can possibly be a warning sign of a brain tumour, especially when linked to other symptoms like persistent headaches and vomiting.

'HeadSmart has two aims: to save lives and reduce long-term disability by bringing down diagnosis times.

'On average, the campaign has halved diagnosis time from 13 weeks to 6.5 weeks, and we are determined to get that down to four weeks or under.

'We are delighted for Annabelle and her family that she is doing so well and wish them a very happy Christmas.'

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Cystic fibrosis sufferer being 'suffocated by own body' pleads for 'wonder drug'

The family of a young woman critically ill with cystic fibrosis have issued a plea to NHS chiefs and drug firm bosses to provide her with a breakthrough drug that could save her life.

Nicole Adams, 28, from Belfast, is in the end stages of the genetic disease that affects 10,000 Britons and kills half of sufferers before they reach the age of 40. Nicole’s lung function hovers at just 13 per cent, leaving her struggling to breathe.

Hospitalised a month ago with flu, in a video message to well-wishers she described the feeling as ‘like being suffocated by my own body’. Her condition seemed stable until Wednesday, when she was suddenly rushed into intensive care. Doctors are now battling to clear her airways.

Her only real hope lies in a new medicine that can dramatically improve lung function – but the pioneering pill is not yet licensed in Europe or approved for NHS patients. UK doctors may not be able to start prescribing it until 2021, as financial watchdogs who assess drugs are ‘very busy’ at the moment, according to sources.

The drug, called Trikafta, has, however, been available in America since October, after US authorities gave it the green light following ‘stunning’ clinical trial results. In the next few months it will also be available in the Republic of Ireland – just a short train ride away from Nicole but under an entirely separate healthcare system.

Trikafta has been dubbed the ‘Holy Grail’ by cystic fibrosis sufferers and campaigners.

Although it has not yet been passed by the European drug safety body, the company which makes it, Vertex, could bypass the system and supply it directly to Nicole’s medical team. So-called ‘compassionate use’ of new drugs is legal, if sanctioned by doctors in a bid to save the sickest patients.

Nicole’s devoted boyfriend Ciaran McVarnock has also launched an appeal to raise the estimated £20,000 it would cost to buy a one-month supply of Trikafta from America. By yesterday they had almost reached their target. Yet, while the fund may buy Nicole time, what she and other patients in similarly bleak situations need urgently is a longer-term solution, say her supporters.

Speaking last week to The Mail on Sunday from Nicole’s bedside at Belfast City Hospital, Irish boxing champion Ciaran, 27, said: ‘They’re calling Trikafta the wonder drug. It’s saved lives, and we need to get it for Nicole as soon as possible.

‘I know it’s a complicated situation, and the care she has received is incredible, but this is life and death for her – it makes me so angry and frustrated that the drug is out there and that she can’t get it.

‘We’ve been overwhelmed by the positivity from around the world – we’ve even had cystic fibrosis patients in America offer to send Nicole their Trikafta tablets, saying it’s made them feel so much better they could do without it for a bit, but of course we can’t accept.

‘She needs her doctors to give it to her, and she ticks all the boxes to receive it on compassionate grounds. Nicole is a fighter, she is so strong, but I’m worried about how much fight she has left in her. She is trying to stay positive. We all are. But she needs Trikafta now.’

At the end of October, the Government announced a landmark deal for cystic fibrosis medicines – ending a four-year row with the drug manufacturer, Vertex, over costs. The contract to supply the tablets Orkambi and Symkevi was said to be the largest financial deal of its kind in NHS history – potentially amounting to £100 million over two years. But the talks dragged on for so long the drugs are now, since the introduction of Trikafta in America, ‘obsolete’, some campaigners have claimed.

Last month, this newspaper revealed how NHS chiefs, under pressure from politicians wanting to break the deadlock, signed the deal for Orkambi and Symkevi – but not Trikafta, because they were unable to agree on a price for the newer drug. At present, if a medicine is to be approved for routine NHS use, first the European Medicines Agency has to give it a licence. Then UK prescribing watchdog the National Institute for Health and Care Excellence (NICE) assesses its value – a complex calculation based on the cost of the drug versus how well it works.

If it brings a significant improvement in quality of life and reduces the amount of other treatments a patient needs, it is deemed cost-effective and given the green light. Finally, NHS England make a financial agreement with the drug’s makers before it goes to patients.

Publicly available documents show that Vertex wanted NHS England to pay a single price per patient, per year, that would cover all cystic fibrosis drugs, as well as those being developed – namely Trikafta, which was showing promise in trials from 2017. Although financial details are confidential, The Mail on Sunday has been told the amount Vertex was asking for was close to £50,000 – for Orkambi, Symkevi, an older drug Kalydeco, and the then-forthcoming Trikafta.

NICE and NHS England would pay only up to £12,000 per patient, per year, sources have said. And not without reason: Orkambi and Symkevi bring about only a modest improvement in health. Many clinicians believed the price Vertex was asking was too high. Vertex argued the figure reflected the game-changing nature of Trikafta.

NHS chiefs seemed unwilling, or unable, to put faith – and finances – into a drug that wasn’t yet launched. Neither side was prepared to budge and in May, despite all parties knowing how important the new drug was, Trikafta was ‘taken off the table’ in talks. The result of the impasse is that Trikafta was approved for use in America on October 21, and two days later Orkambi and Symkevi – older, less effective drugs – were approved for UK use.

While they do stabilise symptoms, slowing deterioration, Trikafta, improves lung function – and is four times as effective. And while Orkambi and Symkevi work for less than 45 per cent of cystic fibrosis patients, Trikafta is effective in 90 per cent of cases. Experts anticipate almost all patients on Orkambi or Symkevi will switch to the newer drug, once they can get it. Many suggest it will turn cystic fibrosis from a fatal illness to a chronic, manageable disease – extending life expectancy.

Nicole has battled gradually worsening health since her teens, and other complications mean a heart and lung transplant isn’t an option. She was given early access to Orkambi at the end of last year but suffered a bad reaction and had to stop taking it.

She ran her own hair salon in Belfast but earlier this year was forced to close the business due to her worsening health.

She was started on Symkevi at the beginning of last week and seemed to be getting stronger. But then, on Wednesday, her condition suddenly worsened.

Cystic fibrosis causes thick, sticky mucus to build up inside the body – clogging the lungs and digestive system. This leads to problems with absorbing nutrients and makes sufferers prone to infections in the airways. The result, ultimately, is irreversible, fatal lung damage.

Orkambi, Symkevi and Trikafta all work by ‘switching on’ a process in cells that helps balance the levels of salt and water in bodily fluids, thinning the mucus.

At first, the drug can cause a dramatic increase in the amount of mucus in a patients’ lungs, which then has to be coughed up. This, say her family, may be the cause of Nicole’s current, acute breathing difficulties.

For all cystic fibrosis patients, daily physiotherapy sessions involve exercises designed to help bring up mucus from the lungs, clearing the airways.

But for someone as unwell as Nicole, who is unable to walk more than a few feet without becoming utterly exhausted, these sessions represent a mammoth physical task.

Whatever happens next, for a patient such as Nicole with end-stage cystic fibrosis, Trikafta could be not simply a lifeline, but a chance to live normally again.

To add to the family’s frustration, after a deal done last week by health chiefs in the Republic of Ireland, patients there will be prescribed Trikafta as soon as it gains a European safety licence, expected by April. The Irish Health Service Executive signed a pipeline deal – of the type ‘taken off the table’ in UK talks.

This will come as little comfort to Nicole and her family in Northern Ireland, which is under the NHS.

In the past two weeks, following The Mail on Sunday’s initial report, NHS England and NICE have met, separately, with Vertex to try to thrash out a deal for Trikafta.

A source close to the negotiations said: ‘NHS England have now said they want to do a deal as soon as possible for Trikafta, so the UK doesn’t lag behind other European countries when the drug is approved in early 2020. But NICE have said they’re very busy, and it could take up to a year to assess the drug.

Many people involved feel this is completely unacceptable, when patients are in such desperate need right now.’

Nicole remains in a critical condition. But as soon as she is well enough, her family want her to be able to start on Trikafta.

Ciaran said: ‘She should have had it before now. It’s what she really needs.

‘But it’s not just about Nicole, it’s about everyone who comes after her – I’ve seen first-hand what people with cystic fibrosis go through. They need Trikafta now.’

A spokesman for Vertex said: ‘We cannot comment on specific patients, but take all requests for compassionate use of our medicines very seriously. We are working diligently to assess these requests as quickly as possible once they are received from a patient’s doctor, which is the sole means of initiating this process.’

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Mum can't wrap kids' Christmas presents after Parkinson's diagnosis at just 34

Age 21, Nicky Doyle, noticed that her hand started to shake. At the time, she was working as a finance manager and in her spare time, loved running and exercising and thought she was just stressed by her busy lifestyle. She made trip after trip to see her doctors and was given a whole range of explanations. She had no idea that the shake in her hand was the first sign of Parkinson’s – a progressive neurological condition, which means the brain slowly deteriorates over time. It took 13 years for Nicky to finally get her diagnosis, at the age of 34. Nicky, from Brierley Hill, Dudley, was told she has early onset Parkison’s as the condition usually happens in people over the age of 50 – just 4% of cases each year are younger. Nicky tells ‘I first noticed a little tremor to start with but I thought it was just stress. ‘I went to the doctors and they diagnosed me with an underactive thyroid, which seemed pretty minor. ‘It was gradually getting worse and I was told it was dystonia, which is a type of uncontrolled muscle movement.’ Dystonia is associated with Parkinson’s but Nicky’s condition was not linked because of her age. By 26, Nicky was fed up with the tremor that was gradually getting worse and she again went to the doctor for more test.

But before she could be referred further, she found out she was pregnant with her daughter Olivia. She explains: ‘Throughout the pregnancy, I didn’t shake once. I felt fabulous. It was great. And then the minute I had her, it all came flooding back and I was even worse. ‘I couldn’t really feed her, I couldn’t bath her. It was really horrendous. ‘It was a really difficult time as a new mum. I cried so many times, I think my eyes dried out.’ With her tremor now having a huge impact on her life, she insisted on further investigations into the cause but she was told again it was just dystonia.

‘I was trying all sorts of things – alternative therapies, yoga, hypnosis, supplements, exercise and meditation. You name it, I did it – but nothing was helping.’ Eventually, four years ago, Nicky was referred to a neurologist and she asked for a DAT scan – a test used to diagnosis Parkinson’s by measuring the level of dopamine receptor cells in the brain. She says: ‘I think, by then, I knew it was Parkinson’s. I just knew my body. ‘I wanted an answer. I was sick to death of feeling awful all the time. ‘As a young woman, I just wanted to be normal.

‘I was so anxious about going out because people would come up to me and think I was drunk or on drugs. It got to the point where I hated leaving the house because of the stares. ‘People don’t realise that young people get Parkinson’s – they see it as something that happens to older people.’ At the end of the test, Nicky looked at the technologist and said: ‘I’ve got Parkinson’s, don’t I?’ She wasn’t able to give Nicky an answer as the diagnosis comes from a doctor but she told Nicky ‘What will be will be.’ Nicky adds: ‘I just knew I had it. Two weeks later, I got the phone call to say I needed to see the doctor. I was like a woman possessed. I made the doctor tell me over the phone. ‘Three days later, I went to see the doctor to talk about it. I went on my own because I didn’t want to deal with anyone else’s emotions.

‘I actually just dealt with it. I just asked what I had to do and what tablets I  had to take. After struggling for so long, it was a relief to know what it was.’ But although Nicky was now able to take medication to slow down the progression of the condition, it still had a huge impact on her life. She explains: ‘At the time I was running a construction firm with my ex-husband but is was so difficult. ‘I’ve given up work now. I’m only 38 and I find that really hard to deal with.’ For Nicky, one of the most difficult times was at Christmas as she feels she wasn’t able to do some of the things that make this time of year special. She says: ‘Wrapping Christmas presents was one of the things for me because my hands would shake so much, my mum has had to do it for me for years. ‘I can laugh about it because I will say I’d say I could do it but I’ll end up going through a whole roll of wrapping paper and wouldn’t have wrapped one present. It was upsetting.’ Nicky uses medication and regular exercise to help with her symptoms but her condition cannot be cured. She says: ‘It has helped as if I didn’t take medication, I wouldn’t be able to walk, talk or function properly. ‘I do need help and every day is different but it is working for me at the minute.’

Being a mum to Olivia and William, now six, Nicky says it is hard being a mum and dealing with the condition. She says: ‘Some days it’s just those little things like fastening buttons or tying your child’s shoelaces. ‘There’s very little support for kids who are watching their mum, dad or grandparent slowly deteriorate. ‘My kids have never known any different but one of the worst things I have heard my little girl say is “Mummy, is Parkinson’s going to kill you?” I was in bits. ‘It is very challenging and it affects every element of my life.’ She adds that in a way, she is glad it took so long to get a diagnosis because she thinks if she had known when she was younger, she wouldn’t have had children. ‘They are such a blessing and I couldn’t imagine life without them but it would have been very different if I had been diagnosed when I first had symptoms,’ she says.

Despite everything, Nicky has remained positive. She says: ‘I actually count myself really lucky because there are people who are much worse. At the minute I am doing ok and I take it day by day. ‘I do believe that anything is possible with some help and support. ‘It is really hard for my family and we don’t really talk about it because I am their daughter and they are looking after me.

‘My mum comes in and helps me with cleaning and cooking and is like my carer. Without her, I would be lost.’ Nicky is the face of the Parkinson’s UK campaign and she works with the charity to raise awareness of the condition. She adds: ‘They’re doing amazing work both in getting the message out there about Parkinson’s and helping people understand but also in raising money for research. ‘I hope that this money they raise over Christmas will go towards better treatment.’


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Real estate agent, 26, who vows to beat cancer after being told she has just months to live receives more devastating news

A young woman who has been given just months to live but refuses to accept her diagnosis has one more opportunity to save her life. 

Cairns real estate agent Lisa Griffiths was first diagnosed with brain cancer when she was just 22 years old when a 6.7cm tumour was discovered in 2015. 

Now 26, she travelled to Mexico where she underwent a course of treatment not yet available in Australia. 

But during the course, Ms Griffiths was told the tumour in her skull was growing at a 'rapid pace' to the point of being able to feel it at the back of her head. 

She returned to Australia on Thursday.

An update on GoFundMe by her friend Megs Whiteside revealed that new lesions have been spotted on Ms Griffiths' lungs. 

Ms Griffiths previously battled the aggressive cancer for four years, which saw her learning to walk again and suffering memory loss and speech difficulties. 

'When I was first diagnosed at 22 they gave me a year [to live] and I survived,' Ms Griffiths previously told Daily Mail Australia.  

Ms Griffiths will now undergo a clinical trial agreed upon with her neurosurgeon and plastic surgeon. 

'Lisa has an extremely rare soft tissue cancer,' Ms Whiteside wrote.

'So rare that there are few people in the world with this type of lesion as a primary intracranial tumour.

'This has always made her case extremely unusual and has made treating her very difficult. 

'Given the nature of this aggressive disease, Lisa's specialist team suggested she proceed with a clinical trial as soon as possible in hopes to shrink the tumours, as all other treatments have been unsuccessful.'

Ms Griffiths has already had her first dose of the treatment in the clinical trial and 'tolerated this extremely well'. 

She thanked the community for their continuous support.

The GoFundMe page has since reached $162,967 of the $150,000 goal and continues to grow. 

After having spent $250,000 of her own money, Ms Griffiths believes the majority of the money has been contributed by friends and local businesses in the Cairns area.

'Never once has she ever complained or looked for sympathy even when she was devastatingly faced with loss of eyesight,' Ms Whiteside wrote on the fundraiser.

'Through every grim diagnosis and only weeks after each surgery she turned up to work every day with a positive attitude, always looking to make others smile.'

Ms Griffiths' partner Troy McGuane has also contributed to the cause by sharing an impassioned video online asking for help. 

Mr McGuane almost broke down in tears as he spoke of the terminal diagnosis and the public's generosity.

'The support has humbled myself and Lisa and I have cried multiple times today, not in sadness but due to me being so proud of her,' he told Daily Mail Australia.

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Daughter of woman mauled to death by her eight-year-old pit bull Amigo

A Massachusetts woman has died after she was mauled to death by her dog while suffering a seizure - but the family won't put the canine down. 

Melissa Astacio, 44, was suffering a seizure in her Somerset home on Friday when her eight-year-old pit bull named Amigo attacked her. 

Police were called to the home around 5.20pm by Melissa's daughter Heaven.

Responding officers were forced to taser the dog before paramedics could assist Astacio, who had a history of seizures. 

She was rushed to the hospital and died from her injuries.  

'I don't think he was trying to attack her,' Heaven said to WJAR. 'I think the dog was just trying to help my mom but he's just a dog and he didn't know any better.'

'What happened that night, it never happened like that before. I don't want to see my dog get put down for something he was only trying to help with,' she added.  

She said her dog had never reacted violently in the past to her mother having a seizure. 

'The dog would just lay on the side of her and like sniff her and stuff like that,' Heaven said. 

The dog Amigo was brought to Swansea Animal Rescue where he was placed in quarantine as officials investigate the incident. 

The family had Amigo since he was a puppy.  

While pit bulls are stereotyped as dangerous dogs, experts say the breed isn't necessarily more aggressive than other canines. 

'Every dog has behavior that comes from both nature and nurture, and no breed is inherently good or inherently bad any more than any human being is,' Dr. Terri Bright, director of behavior services at MSPCA-Angell said, according to the Boston Herald

Astacio's death has shook the community as some locals left flowers on the doorstep of the mother-of-three. 

'All my mom ever wanted was for me and her three kids to have a better life than she could,' Heaven said.  

Police do not believe criminal conduct or foul play is suspected.

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Stricken baby left with 'bulging soft spot' on his head after 'dad battered him'

A baby was left horribly injured and suffering from a ‘bulging soft spot’ on his head after his dad battered him, police say. Victor Morales, 23, was charged with injury to a child with serious bodily harm on Wednesday in Wichita Falls, Texas after the child was discovered to have severe head trauma in September. Police say the baby was rushed to the emergency room at Cook Children’s Hospital in Fort Worth due to a brain bleed and bulging soft spot. The infant’s mother said her son had been crying and throwing up his bottles on the night before she took him to the hospital, which is when she noticed he had a popped blood vessel in his eye.

She said Morales told her their son fell off a bed when he was getting a bottle. But doctors at the hospital later said they believe the injuries were ‘non-accidental’ and could only come from a car accident or a violent force such as shaking or slamming.

The child’s mother said she called Morales to tell him her son was in the hospital and he began to ‘freak out’ because he was the only person with the child that day. Morales said his son woke up fussy so he changed the child’s diaper, then went to go make him a bottle.

He said while he was gone, he heard a thump and later found the child on the floor. Police arrested Morales this week and he now faces a first-degree felony, although authorities have not revealed what led them to charge Morales, who is being held in jail on $100,000 bond. Last year, Morales was arrested for possession of marijuana and trespassing at a Walmart he was previously banned from.

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Grandma Goes Mission Impossible While Dangling A 7 Y.O. From The 5th Floor to Rescue Her Cat

If the thought that your pet is more precious to you than anything else has ever crossed your mind, we are almost certain this video captured in China might make you reconsider your priorities. As much as we all love our pets, most of us probably wouldn’t risk our child or any other young kid just to get our beloved pet to safety. Well, this grandma has her priorities in quite a different order, apparently. When the reckless lady noticed her cat sitting on a ledge one floor lower, the best idea for rescuing the feline that popped into her head was apparently to risk the life of her own grandchild and dangle him from the balcony on a rope. Only in China, right?

Passers by filmed this little clip that shows the Chinese grandma dangling her 7-year-old grandson named Hao Hao on a rope from the 5th floor balcony in a risky attempt to rescue her beloved cat that was stuck on a ledge one level below their apartment. Footage shows how the boy balances on the tiny ledge, supported by the rope held by his grandma and puts the cat in the bag (no pun intended?) and then both of them get pulled back up to safety by the same grandma, assisted by the boy’s uncle.

The reckless grandmother who’s only known by her surname Tang, was widely criticized after the footage went viral first all over Chinese social media and then all over the world. A spokesperson at the local residential committee, Wang Ying, told BJ News that they had criticized and educated Ms. Tang. She insisted that Hao Hao was not hurt. The spokesperson added that the boy was a first-grade pupil and that his parents were working in another city, leaving him to live with his grandparents.

Ms. Tang said she didn’t feel she was causing her grandson any danger at the time but felt scared for him after watching the footage. Setting that aside, we have to admit one thing – she may not be the most responsible but she’s certainly one hella strong grandma!

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Man jailed for 16 years for pulling down gay flag and burning it

A homophobe has been jailed for 16 years for stealing and burning a Church’s LGBTQ pride flag. Adolfo Martinez, 30, was sent to jail in Des Moines, Iowa, on Wednesday, over the incident at Ames United Church on June 11. He snatched the banner from outside the place of worship – whose pastor Eileen Gebbie is hereself gay – then torched it outside a lapdancing club called Dangerous Curves.

He was handed the lengthy sentence after being convicted of a felony hate crime, third-degree harassment, and reckless use of fire. Adolfo was totally unrepentant about his behavior when interviewed by TV station KCCI in June, claiming his hate was God’s work.

He said: ‘It’s my honor. It is written. It is a judgment and it’s written to execute vengeance on the heathen and punishments on the people. ‘It’s my honor to do so.

It was an honor to do that. It’s a blessing from the Lord.’ Asked if he was specifically targeting people because of their homosexuality. Martinez added: ‘Yes, yes, yes. Exactly. ‘I burned down their pride, plain and simple…I’m guilty as charged.’ Prosecutor Jessica Reynolds said Martinez had been charged with a hate crime because he was motivated by others ‘sexual orientation.’

Pastor Gebbie hailed a jury’s decision to convict Martinez last month, telling the Des Moines Register: ‘I often experienced Ames as not being as progressive as many people believe it is, and there still is a very large closeted queer community here.

But 12 people that I don’t know, who have no investment in me or this congregation, said this man committed a crime, and it was crime borne of bigotry and hatred.’

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