A vital specialist car seat means little Samuel Macdonald can travel safely and comfortably – and give his parents peace of mind that if he has a seizure, he’ll be safe.
Four-year-old Samuel, from Hoddesdon in Hertfordshire, has an undiagnosed muscular disorder which has resulted in his muscles being floppy and his joints moving beyond the usual range. Although he can walk, he needs a wheelchair as he struggles with distances. He also has epilepsy and a normal car seat isn’t supportive enough to keep him safe and should he have a seizure in the car, there is nothing to keep him supported so he could potentially injure himself.
Samuel’s undiagnosed muscular condition means he struggles to get in and out of the car, so his parents lift him, which is becoming more and more difficult as he gets older – and heavier. He also tires very easily and often falls asleep in the car, but without the proper support he slumps and twists which is uncomfortable for him because of his weak muscles.
Samuel’s health professionals told his parents, Alexandra and Paul, he needed a special car seat to keep him comfy, supported and safe – but the cost of the equipment saw his parents turn to Newlife Foundation – the UK’s largest charity provider of children’s specialist disability equipment.
Mum Alexandra said: “We spent ages looking at car seats and really struggled to find anything which we could afford and which suited his needs. We couldn’t afford the special car seat he needed and thought that if we couldn’t get one, we would have to keep on using his old seat – which wasn’t keeping him safe.”
Thankfully a friend told the Macdonald family about Newlife Foundation and they applied to them for the £2,487 equipment which should be suitable for Samuel until he is in his teens.
Newlife has already invested more than £1.6million in car seats alone because local authorities do not have a statutory obligation to supply this equipment; instead, families can apply for a medical exemption certificate which allows their children to be transported unsecured.
However, Newlife believes that the safety of children with disabilities is as important as the in-vehicle security of any child and is currently campaigning for a change in the law. In the meantime, the charity continues to support families through provision.
“As the seat twists it means not only can we get Samuel in and out of the car more easily, but he might be able to do it himself, which will give him some independence.
“Samuel was able to trial the new car seat and he was much more comfortable in it than his old one and properly supported. He loved the bright blue colour and said he felt like a big boy. Having the seat will be a weight off our mind. It gives us the knowledge that he is safe and if he does have a seizure he’s not going to hurt himself before we can pull over.
“We are so grateful that there are charities like Newlife to help us!”
In March Newlife launched the Newlife Hertfordshire Fund –www.newlifecharity.co.uk/hertfordshire – which is an opportunity for local people to help local disabled children. Every penny donated or fundraised in Hertfordshire is guaranteed to support vulnerable families in the county.
Right now, there are another 12 children with disabilities or terminal illness in Hertfordshire who need your help to get the specialist equipment that will really change their lives.
Newlife Head of Operations Stephen Morgan said: “Newlife has already helped 119 children in Hertfordshire through equipment grants and loans totalling more than £182,000 so we know there is a very real need for a specific county fund. In this way we aim to help more children, more quickly.”
Vitally, the Newlife Hertfordshire Fund website –www.newlifecharity.co.uk/hertfordshire – enables local people to find out who needs help in their county right now and highlight the support the charity gives vulnerable families. It includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support local disabled children and their families.
That might involve taking part in a local sporting challenge, give you information on how to organise a fundraising event – or even ask you to donate £5 today! Volunteers are also needed to help raise awareness of what we do and how we do it.
Newlife hopes that by launching the Newlife Hertfordshire Fund, children with disabilities and terminal illness in the county won’t have to go without the equipment they need for everyday life.
Pictured: Samuel Macdonald