Two-year-old Jake Crisp, from Maerdy in Rhondda, will soon be travelling in safety and comfort, thanks to fabulous fundraisers and the support of two leading UK charities.
Jake has Noonan’s Syndrome, hydrocephalus and developmental delay. With weak core muscles, he needs to be posturally supported at all times, including on regular long car journeys to hospital. He is currently using a standard car seat, but, says mum Bethan Crisp, he flops forward and sideways during journeys which causes the safety straps to cut into his neck.
Bethan said: “We have to stop the car each time this happens and reposition Jake. Not only is this unsafe for Jake, it can considerably delay our hour-long journeys to and from hospital. In fact, because of the risk to his safety, the only time Jake goes in the car at the moment is to go to hospital appointments. I can’t take him on my own because a second person needs to be sitting with him and watching him otherwise he ends up with red marks on his neck.”
Bethan, who has two other children with Noonan’s Syndrome, added: “This is a basic need for Jake but there is no statutory funding available locally for the specialist car seat we need. With the equipment costing £986, there is no way we would be able to afford it ourselves so we were relieved when our local occupational therapist told us about Newlife Foundation.”
Funding through Genetic Disorders UK’s Jeans For Genes Day is now helping to provide the car seat and Jake will soon be safe and comfortable on car journeys.
Genetic Disorders UK has partnered with Newlife Foundation to offer more families affected by genetic disorders the vital support and equipment they need. Newlife received a grant from funds raised through last year’s Jeans for Genes Day, and this is helping to provide essential specialist equipment such as pain relieving beds, buggies, car seats and portable hoists which will make a real and lasting difference to the lives of individual children and their families.
Bethan added: “Jake is small for his age – he is the size of a one-year-old – so it is important he has the extra head and side padding and recline facility this specialist car seat offers. It will also have a swivel base for easy access in and out of the car and a five-point harness to keep him secure.”
Newlife Operations Manager Stephen Morgan said: “Demand for our range of practical support services is growing as statutory services’ budgets are reduced. Last year (2015), Newlife supported 2,597 children around the UK through its range of equipment grant and loan services. Therefore, we are delighted to be working with organisations like Genetic Disorders UK. Together we can provide the equipment that really will change children’s lives.”