JEMIAH Pierre-Madigan is a happy, bubbly seven-year-old who loves to go out and about with her family.
But the crippling genetic disorder she suffers from means that trips out of the house have to be kept short.
Jemiah was born with the life-limiting Wolf Hirshhorn Syndrome, caused by partial deletion of chromosome material.
It means that she is unable to walk or talk and has only partial sight and hearing.
She has already had several operations on her eyes and stomach.
Now the charity Newlife and parents John and Paula Pierre-Madigan, of Warneford Rise, Cowlersley, are trying to raise funds for a tailor-made wheelchair which would give Jemiah a new lease of life.
The specialised wheelchair, which costs £3,569, converts into a bed which can be used as a treatment area or for changing Jemiah.
It would be made specifically for Jemiah’s body and would make excursions far more comfortable.
It would also help her to sit up straight and lift her head so she would be more aware of her surroundings.
Newlife, the UK’s leading children’s disability charity, has contributed £1,319 towards the chair and the local NHS has given £1,250. Organisers are hoping to raise the remaining £1,000 from donations.
Newlife spokesman Sheila Brown said: “We are appealing for local donors and fundraisers to raise, or pledge to raise, the remaining £1,000.
“Jemiah doesn’t have the luxury of time and we want to make sure that she gets the specialist equipment she needs as soon as possible.”
Jemiah’s father John, said: “Jemiah is a very bubbly, happy-go-lucky and loving girl. She loves being touched, cuddled and tickled.
“The new wheelchair would make a significant difference to Jemiah and to us as a family.
“We don’t go out with Jemiah except for very short trips. The new wheelchair would give her the freedom to go out and about much more.
“It would care for her in the best way possible and make her life more comfortable. The wheelchair would help to develop her muscles and hold Jemiah in a position where she could sit up straight, keep her head up and look around.”
He said that her specialist had said that, although Jemiah is severely disabled, she is aware of everything going on around her.
Jemiah’s favourite activity is Riding for the Disabled, which she loves, according to John. She has a half-hour lesson every week where she is held on the horse by two people.
She also goes to St John Ambulance at Moldgreen, where her mum runs the Division, and has an hour of activities every week.
John added: “We would be able to socialise more as a family.
“The wheelchair is very expensive. Unfortunately, the more disadvantaged children are further disadvantaged by the astronomical cost of the specialised equipment they need.”
Anyone who can help should contact Newlife on 0800 988 4640 or email email@example.com