Fourteen-year-old Eleanor Freeman has beaten the odds to survive and defied doctor’s expectations – but now because she has a shared walking frame at school she’s forced to miss out on funding for one at home – and the chance to walk, be more independent and have fun with her friends.
Eleanor, from Eggbuckland in Plymouth, has a genetic condition so rare parents Donella and Mark say they were told no other child has the exact chromosomal condition – and were warned not to expect her to survive to her first birthday.
When she did, they were told Eleanor wouldn’t walk, sit up or speak, but she has astounded doctors with single word speech and now sits up without help.
Mum Donella is also convinced the tenacious teen may one day walk without help too, and says she just needs the chance to practice her walking as often as possible – but she can’t do that without a specialist walking frame of her own. It would let her experience much more in life and join in with friends, instead of watching from her wheelchair.
Eleanor’s family has been told that, as she shares an NHS funded walking frame at her special school with all the other students who need it, it means she isn’t entitled to an NHS walker at home. Now Newlife the Charity for Disabled Children is appealing to the local community to help fund a £1,387 walking frame for Eleanor to use after school, weekends and holidays.
Donella said: “We really try to concentrate on everything Eleanor can do, rather than what she can’t, but her quality of life would be so much better with a walking frame and it would give her the practice she needs to one day walk. Eleanor amazes me every day with all that she can do!
“Her development delays put her at age four or five and she just wants to be involved in everything. Unfortunately, although she can bum shuffle, she can’t join in the same way she could if she was upright and walking with the support of the frame.
“Without one, even simple things like playing with friends means she’s on the side lines in her wheelchair. With a walker she wouldn’t have to be.
“A walker would mean freedom, independence and exercise. It would mean playing in the garden and visiting the park with friends – all those things children love to do.
“It’s so sad to see her missing out on things. Having a walker would be life changing. She could get so much more out of life and that’s all any parents really wants for their child.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “Having the right equipment at the right time can be life changing for families with disabled children and for Eleanor being able to use a walker to get around would open up a whole new world for her.
“Unfortunately, as much as we want to help Eleanor 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 Eleanor can have the walking frame she urgently needs.”
STOP PRESS: Thanks to a great community effort and lots of media support we have now raised enough money for Eleanor’s walking frame.
However, you can still donate to help the other 13 children on our waiting list in the South West who need £30,615 of specialist equipment. If you are able to help If you are able to help please donate via the website, call 01543 431 444 or email [email protected].