As the oldest person surviving in the UK with an incredibly rare metabolic condition 16-year-old Ella Meaden is a fighter – but without a specialist hoist to move her she can only leave her Fyfield home for an hour.
Unable to walk or talk, Ella has uncontrollable seizures and learning difficulties due to a defect in her enzyme system called Non-Ketotic Hyperglycinemia (NKH). This is believed to currently affect just 15 people in the UK and 500 worldwide. Unable to do anything for herself, Ella needs 24-hour care.
Newlife the Charity for Disabled Children is urgently appealing for help to raise £2,000 needed for a specialist hoist to open up the world for Ella. This would give her the freedom to go out with her parents, Claire and David, and 13-year-old brother, Louis, to meet family and friends and visit new places.
Despite the devastating diagnosis at four-months old when her parents were warned she might not reach the age of three, and certainly not double figures, Ella’s beaten the odds to become a teen who her mum says has a ‘wicked sense of humour’ and who loves socialising.
But after surgery last year to implant metal rods into her severely curved spine to prevent it crushing her internal organs, she’s too delicate for her parents to lift, especially as she’s waiting for surgery to stop both hips dislocating.
Mum Claire said: “We’re pretty much home bound now. Although Ella’s feeling better we can’t risk moving her on our own. We miss out on making memories together and this year we’ll miss family parties for my grandmother’s 90th birthday and my dad’s 70th birthday – it’s only a 90 minute journey to see them in Poole, but it’s impossible.
“At home Ella has a ceiling track hoist to get her from bed to wheelchair, but we can’t take her out for long without a portable, foldable hoist because there’s no safe way to move her once we are out.
“When Ella was younger we could lift her to take care of all her personal needs away from the home, but lifting her now without a hoist is just too risky for her – and for us as our backs are damaged from years spent lifting her. It’s such a worry as we need to be fit enough to care for her.
“Now either David or I stay with Ella while the other takes Louis out, but we never get to do anything all together. We just want to be able to access the outside world again as a family.”
Senior Manager for Newlife’s Child and Family Team, Carrick Brown, said: “A mobile hoist would make a huge difference to Ella’s life, providing a safe and dignified way to move her without risk to her or her parents. It would give them the freedom to visit people and places and make memories that most people take for granted.
“Unfortunately, as much as we want to help Ella and her family, we simply don’t have the funds to buy the equipment right now. We are desperately appealing to the local community for help to raise the money so Ella can have the specialist hoist she urgently needs.”
Anyone able to help Ella should urgently contact Newlife on 01543 431 444, visit the website at www.newlife.support/HelpElla or email email@example.com. You can also text NEWLIFE ELLA to 70500 to give £10 to Ella’s appeal. Newlife will receive 100% of your donation. Texts cost £10 plus 1 message at your standard network rate. Always get the bill payers permission.
Ella is just one of 51 children in the South East on our waiting list and in desperate need of specialist disability equipment costing a total of £33,873, so every penny we raise is so vital. Money raised above the amount needed for Ella’s hoist will be used to help other disabled and terminally ill children in need.
4/9/2020: STOP PRESS: Thanks to a great community effort and lots of media support we have now raised enough money for the equipment. However, you can still donate to help other children on our waiting list If you are able to help please call 01543 431 444.