For two-year-old Jacob Carter, a trip to London with his parents isn’t a treat – it’s a necessity. It isn’t an enjoyable journey for the Hertfordshire toddler, whose rare condition means he must attend weekly appointments at Great Ormond Street Hospital. It is a journey that is filled with pain, as the car seat he has to use for the 2.5 hour round trip causes painful pressure sores on his spine.
Jacob has a rare condition known as Hurlers Syndrome and has recently had to undergo a bone marrow transplant in order to slow the progressive symptoms of the disease. The transplant however, didn’t stop the abnormalities to Jacob’s bone structure and he will need future surgery to his spine, knees, hips and possibly to his neck.
The distinct curvature to Jacob’s spine means that traveling to his regular hospital appointments in a standard car seat which doesn’t offer the correct support and comfort that he needs, is painful and distressing for him.
His mum Jennifer said; “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 and 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. 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 specialist car seat like the one Jacob needs can be expensive and there is no statutory funding available, so Jacob’s parents turned to Newlife Foundation, the UK’s leading charity funder of specialist equipment for children with disabilities and terminal illness, for help.
In Hertfordshire, Newlife has provided in excess of £192,000 of disability equipment – including beds, wheelchairs, seating and sensory aids – for 137 children.
However the demand is still high and Newlife is currently working with six children in Hertfordshire alone who need equipment totalling £4,565 – and that’s why Newlife has a dedicated Hertfordshire Fund – www.newlifecharity.co.uk/hertfordshire – giving local people the chance to help local disabled children like Jacob, and every penny donated or fundraised in Hertfordshire is guaranteed to support families in the county. The Newlife Hertfordshire Fund supports equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Newlife guarantees that 100 percent of the money donated or fundraised for Jacob will go towards funding his special car seat and any surplus funds raised will go toward helping a disabled or terminally ill child within the Hertfordshire area.
Further information about the Newlife Hertfordshire Fun – and how to specifically donate or fundraise to help Jacob – can be found by going to www.newlifecharity.co.uk/hertfordshire or emailing [email protected] Telephone donations can be made by calling 01543 462777.
Pictured: Jacob Carter