01 Oct 2022

Great news for family of Co Derry boy who travelled to America for treatment for rare spinal condition

A Ballinderry mum says she intends to raise more awareness of an advanced treatment for a rare spinal condition in that hope that it will be made available to children in the North. Donna Ferris’ three year-old son Charlie was diagnosed with progressive infantile idiopathic scoliosis when he was just six months old. If left untreated, the spinal deformity can lead to severe twisting of the spine, respiratory problems and even decreased life expectancy. When little Charlie was first diagnosed back in February 2016, doctors in Belfast told his anxious parents Donna and Jodie that their only option was to put their son in a plaster jacket to hold in the curve in his spine until he was old enough for surgery. However, determined Donna vowed to do everything in her power to keep her baby son away from the operating table and invasive surgery. After hours of online research, the mum-of-four found a hospital in the United States which offers specialised scoliosis treatment. Donna discovered that Shriners Hospital in Philadelphia offered advanced treatment which could potentially avoid surgery. She said: “When I was researching I checked for hospitals in the east coast of America as I knew it would be easier to fly into there from Ireland.  I came across Shriners Hospital and made contact straight away asking if they accepted international patients.  They said they did and sent me some forms which I filled in.  Within four days of applying to the hospital for the treatment Charlie was accepted, and within a month he was at the hospital.” On April 3, 2016, Donna, Jodie and their four kids made the trip to Philadelphia for Charlie’s first appointment. Just a few days later, Charlie was fitted with a Mehta cast which was specially designed to correct the curve in his spine. Over the last 30 months, Charlie has made the same journey 14 times. Before having his first cast fitted, the curvature in Charlie’s spine was at a 45-degree angle. Earlier this month, during their 14 th trip to Shriners Hospital, the Ferris family received the news they had been hoping for. “They took Charlie’s brace off 24 hours after arriving at the hospital and sent him for x-rays.  After this the doctors brought us in and gave us the great news that Charlie’s spine is now down to six degrees,” said Donna. “I just burst into tears crying.  I just couldn’t believe it.  The staff at the hospital were also crying and hugging us.  They were just so, so happy.  They are always willing the children on there.  It was just amazing news to get.” Donna said before starting his treatment in the US, Charlie was a ‘very restless baby’ and she ‘really struggled to get food into him’. Now, she says her son is a completely different person. “The boy we have now is just perfect.  He is meeting all his milestones and is doing everything a wee child of his age should be doing and he will go on to lead a healthy life,” she said. “Charlie knows that he’s different and he has to wear a brace that not everyone else does but he’s adapted to it all from the get-go, he’s just brilliant. “The plan now is that Charlie will remain in brace until June next year and then he will switch to a night time brace for six months at least.  Hopefully he will not have to wear a brace at all eventually.” Following Charlie’s diagnosis and the news that he would have to travel to America for the specialised treatment, the Ballinderry and wider community set about fundraising for the family to help fund their travel, something which the Ferris family are ever grateful for. Donna also has nothing but praise for Shriners Hospital. “Words cannot describe how grateful we are to the hospital for what they have done for us,” she said. “When we first took him to the hospital we knew Charlie was going to be in expert hands as they specialise in infantile scoliosis. “We are so, so grateful to them and it’s very hard to put into words how good they all are.  They don’t just treat Charlie, they treat the whole family.  It’s the same people treating Charlie each and every time and he has become so familiar with them all. “Shriners is a non-profit hospital and they treat families regardless of their ability to pay.  All the time we have been there we have never received a bill from them.  To go half way across the world to another hospital and not be billed is just amazing.” Charlie’s journey over the last 30 months has been well documented by Donna on a Facebook page named ‘Charlie’s Journey with Infantile Scoliosis’. Through the page, other parents in similar situations have reached out to Donna who has offered them support and advice.  She has also given them ‘hope of what can be achieved’. On November 10, Donna attended the Families First awards ceremony in Sligo Park Hotel where she was presented with an ‘Inspirational Person’ award – an accolade which she had been nominated for by a parent from Co Cavan. “I spoke to the audience and told them our story and I received a standing ovation afterwards.  I was just overwhelmed by how many people I have touched out there.  It was the perfect end to the perfect week.” Donna now hopes that by speaking out about Charlie’s treatment that it will give other children hope. “The treatment that Charlie received at Shriners Hospital has been available at Great Ormond Street Hospital since July this year however I really want it to become available across the UK and Ireland. “Charlie is living proof of what can be achieved by this gentle, non-invasive treatment so why not offer it to babies here and give them a chance. “I want to be able to help other children in our own country and want parents not to have to feel the need to travel abroad for adequate care.  I would just love to see this treatment available here so there is hope for other families.” To follow Charlie’s progress visit ‘Charlie’s Journey with Infantile Scoliosis’ on Facebook.  

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