Specialist disability equipment - Jeans for Genes

Specialist disability equipment

Newlife the Charity for Disabled Children, is the UK’s largest charity funder of children’s specialist disability equipment and the only provider of specialist equipment loans to help children in urgent need.

For five-year-old Rhys Dean, and his family, the charity Newlife has been life changing. Rhys has complex health issues and vomits up to 40 times a day – each time is a choking risk.  Newlife provided the family with a specialist car seat which keeps Rhys fully supported, reducing the risk of choking. The seat tilts so he is more comfortable and rotates to enable parents Stacey and Brad to get him out of the seat quickly if he is in difficulty.

Rhys was born with the rare genetic condition Noonan syndrome and has had numerous operations including three open heart surgeries. He has spent a third of his young life in hospital. Before the specialist car seat, the couple continually worried that Rhys would choke during each lengthy drive to hospital.

Stacey, 32, from Milton Keynes, says: “Before, we couldn’t safely go out in the car with him, because of the risk of aspirating and choking on his vomit. Rhys sees his doctors at Southampton hospital, but the two-hour journey was easily doubled because we had to stop the car so much to prevent him from choking. Even though Brad sits in the back with him, a normal car seat is not supportive enough.

“This car seat has made a big difference. The position is more comfortable for him and helps his reflux. Now we can tilt the car seat and release him quickly when we need to. If it wasn’t for Newlife we wouldn’t be able to take him out of the house.”

Newlife is the UK’s largest charity funder of children’s specialist disability equipment and supports over 3000 disabled children and their families. It receives no Government funding. It is the only provider of equipment loans which enable children who are terminally ill or at immediate risk to get specialist equipment rapidly. Newlife’s fast action means families like Rhys’ can be using lifesaving equipment quickly; in Rhys’ case, his physiotherapist recommended making an application and Rhys was using the car seat three days after Newlife placed the order.

Over the last 14 years, Newlife has received over £58,000 from funds raised on Jeans for Genes Day. Every pound goes towards funding emergency equipment loans, delivering specialist equipment at speed to children like Rhys who have a genetic condition, need equipment immediately and just can’t wait. It also helps fund quality of life equipment to enable children to have the best life possible, plus a nurse-led helpline providing information and support and a sensory toy loan service.

Sarah Sylvester​, Head of Philanthropy at Newlife says: “We’re extremely grateful to Jeans for Genes’ fundraising for all they do to help disabled children and their families. The fundraising makes a fantastic difference. This equipment is life-changing, enabling children to be able to communicate, walk and comfortably travel. Without these car seats, families are trapped in their houses. It makes their family safe.

“Over the years, thanks to Jeans for Genes fundraisers, we have been able to provide comfort seating systems so that children can sit in a supported position, specialist beds to prevent injury, mobile hoists for when the family is away from home, specialist buggies and car seats. Less common are Braille tablets for communication.”

One child that has benefited from a BrailleNote tablet is 12-year-old Florence Heffer from Southampton. Florence is visually impaired, has cataracts, glaucoma, and the eye condition nystagmus, due to a genetic condition.

Two years ago, thanks to Jeans for Genes funding, Newlife provided an electronic braille tablet for Florence to use at home, which meant she could do her homework and then carry on her education during lockdown. The £2,616 BrailleNote is the same device she has at school, but because that is funded by the local authority it has to stay on the premises of the school’s visually impaired unit.

“Florence has very limited vision,” says her mum Pip Davies, 51. “She wears very thick glasses and with those on has a useful amount of very limited vision, but without them has only light perception, she can see shadows and outlines but cannot see any detail at all, even my face. I do expect over the years she will completely lose her eyesight.

“I always try to make sure she sees as much as possible. Things as simple to a sighted person as the full moon, trees or the ocean, in case her sight is completely lost, so she remembers it. Florence absolutely makes the most of her limited vision and wants to have as normal a life as possible. She plays blind football for Southampton FC, within their Saintability Team, Goalball, which is a sport specifically for blind people and attends a local drama class.

“Florence is such a strong person and very strong willed. Her desire not to be different has pushed her forward.”

Pip adds: “Florence needs to use braille – which without technology is an extremely slow and limited process. At school she uses a BrailleNote, which is fantastic as she can write in Braille and the print is then projected onto a monitor. It means her form tutor can see her work.

“Newlife helped fund the BrailleNote for home use, which means she was able to work through the lockdown. I hadn’t realised how fantastic it would be. I could see when she is brailling and help her with her work. It has been liberating for Florence, life changing.”