A Pontypridd mum who can’t take her daughter out in the car alone without putting her life at risk needs local heroes to help fund a specialist car seat so she can travel safely.
Six year old Mared has a rare form of Epilepsy which is often so severe she ends up in hospital and has even caused a stroke. She is unable to walk, talk and some days cannot support her own head. Her current high street car seat doesn’t provide the support she needs, so she has to have someone with her so she doesn’t flop forwards and choke or hurt herself during a seizure.
A specialist car seat would make all the difference to Mared’s safety, but this costs £2,320. As statutory services don’t fund car seats, her parents Eirian and Darren turned to Newlife the Charity for Disabled Children for help. Newlife is the largest UK charity providing specialist equipment for children with disabilities and terminal illness.
Mum Eirian: “We don’t take Mared out anywhere that isn’t medical appointments or school because of our fear of something happening to her in her current car seat. She needs a car seat with a supportive head rest that can tilt, so it stops her flopping forward and helps her posture, as well as fast release straps for when she has a seizure.
“Mared is aware of things and gets really frustrated as she can’t tell us what’s wrong, but when she smiles at me, it’s just perfect – it takes my breath away. If we had the right car seat we could do those simple things like take her to see Santa at Christmas or go out as a family with 13-year-old brother Brychan.”
Right now, Newlife has two disabled and terminally ill children in Rhondda Cynon Taff in need of specialist equipment and must raise £5,910 to help them. Newlife has already supported 42 children across Rhondda, Cynon, Taff.
Newlife’s Head of Charity Operations Stephen Morgan says: “Car seats have become essential to daily life for all children to keep them safe, the law insists upon it – unless a child is disabled. Why should disabled children be any less entitled to travel in safety? A specialist seat can cost up to £3,000, which means families are virtually housebound while they attempt to raise the money. Often, with no way to raise this quickly, they turn to charities to help.”
Any funds raised above what is needed for Mared will be used to help other disabled and terminally ill children in Rhondda, Cynon, Taff.
Stephen added: “Without this help, many will sadly go without, as we simply don’t have the funds to support every child who needs our help.”