Letchworth parents appeal for help funding special car seat for two-year-old with rare genetic disorder

Jacob Carter of Letchworth has Hurler syndrome.

Jacob Carter of Letchworth has Hurler syndrome. - Credit: Archant

A Letchworth boy with a rare genetic disorder has to go to hospital in London every week, and spends each trip in agony because his mum and dad can’t afford the right car seat. Can you help?

Jacob Carter of Letchworth has Hurler syndrome.

Jacob Carter of Letchworth has Hurler syndrome. - Credit: Archant

Two-year-old Jacob Carter has Hurler syndrome, a rare genetic disorder that severely affects his growth and development. He recently had a bone marrow transplant to slow the progressive symptoms, but that didn’t rectify the abnormalities in his bone structure. He still needs to have surgery to his spine, knees, hips and maybe his neck.

Jacob goes to Great Ormond Street Hospital for check-ups once a week. The curvature to his spine means that a normal car seat doesn’t provide the proper support, which makes the two-and-a-half hour round trip extremely painful and distressing for him.

“The curve in Jacob’s spine means that when he’s sitting, he slumps forward so when he is in his car seat he is very uncomfortable,” said mum Jennifer.

“He has developed pressure sores which do give him a lot of pain. The back of the seat is so rigid and hard it just doesn’t have the support that he needs – and with traveling to Great Ormond Street every week he really needs a seat that he can be comfortable in.

Jacob Carter of Letchworth has Hurler syndrome.

Jacob Carter of Letchworth has Hurler syndrome. - Credit: Archant


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“It would also be nice to think that we can go out for the day as a family without Jacob being in pain because of his car seat.”

A special car seat suiting Jacob could cost as much as £700. The Newlife Foundation for Disabled Children is trying to help his parents to raise the money.

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For more information about donating call 01543 462777, or go to newlifecharity.co.uk/hertfordshire.

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