Derbyshire five-year-old with twisted spine needs specialist car seat to travel without pain

A genetic mutation called FLNC has caused Harrison Breckell-Carter to develop a dramatic curved bend in his spine, so his shoulders and bottom are no longer in line. His current high street brand car seat makes the six-hour round trip from his home in Ilkeston to London’s Great Ormond Street Hospital so painful and distressing he frequently vomits.

However, his current car seat doesn’t provide the extra support he needs for his journey to hospital, which is made up to four times a month, and the large curve in his spine means his shoulders slip out of the harness, risking his safety in any collision.

Now Newlife The Charity for Disabled Children are appealing for help to raise the £4,610 needed to provide a specialist car seat which will reduce his pain.

Harrison, who has developmental delays and is non-verbal, also has restrictive cardiomyopathy, which can cause sudden cardiac death and needs regular monitoring as he will need a heart transplant – so his hospital appointments are vital.

Change to Harrison’s muscle and skeleton means his lungs are compressed so much it has decreased his respiratory function and caused lung disease – and could eventually crush his lungs – so he now faces an arduous surgery to remove vertebrae and have metal rods fused to his spine to straighten it, after wearing a halo device fixed to his skull and leg bones to slowly pull his spine into a straighter position.

Dad Kelham and step-mum Shannon turned to Newlife, one of the UK’s largest charitable providers of specialist equipment for children with disabilities, as statutory services generally will not provide direct funding for specialist car seats for children with disabilities.

Kelham said: “On car journeys when Harrison is in pain, he’s hard to keep calm because he has little understanding. He clings to us and looks so sad, but the specialist car seat he needs would make such a big difference to him.

“This car seat would be moulded to his spine, so it would it make him much more comfortable on any journey and would also have special inserts to stop his spine getting worse.

“Because there are only 15 known cases of FLNC, and with details only known for a few of them, it’s difficult to know what the future holds for Harrison, which is so hard for us all. Having this car seat for him would mean he’s not in so much pain, so he wouldn’t have that fear of going in the car.

“It also means we could take him and our other children, Cameron, eight, Ava Grace seven and Lydia 12, to more places and we could give Harrison the best life possible going forward."

To donate to help Harrison receive the specialist car seat he needs, please visit newlife.support/Harrison

Alternatively, you can email [email protected] or call 01543 462 777. Any money raised above the amount needed for the specialist car seat Harrison needs will be used to help fund equipment for another child.