Help raise Â£40,000 for little Elsie
The family of a three-year-old Sutton girl with a rare genetic condition are holding a fundraising day to help raise Â£40,000 for equipment she needs.
Elsie Novell has spinal muscular atrophy, which means she is unable to stand or walk.
And, as the disease is progressive, most of her muscles will eventually waste due to a lack of use.
Chris and Charlotte Novell, her parents, are determined she can live as normal a life as possible, in the hope treatment for the illness will eventually become available.
They are holding a fun day at the Post Mill Centre, South Normanton, on Sunday, September 10, from 2-5pm.
Charlotte said: “This will be the third fundraising event we have held and we are hoping to make it an annual event.
“We have had a lot of help from people in the community and some great prizes donated by local businesses.”
There will be a free bouncy castle, a story book princess, a cake stall raffle, tombola, face painting, funfair games and all the usual activities.
The couple say they need to raise £40,000 to help pay for a special lift to carry Elsie upstairs, full ceiling track mounts and an adapted bath.
They have already raised more than £20,000 for an adapted wheelchair for Elsie.
MA (type 2) is a rare, genetic, degenerative muscle condition, which affects the lower motor neurones.
It means Elsie cannot crawl or walk, her arms, hands and neck muscles are considerably weaker than a typical child of her age and eventually her breathing and eating will become increasingly difficult.
Charlotte said: “Elsie is doing better, touch wood.
There have been no hospital admissions since last September and doctors at Great Ormond Street Hospital are pleased with her progress.
“We are hopeful in a few years there will be treatments which will make her condition less life limiting.
“She is a determined girl and starts pre-school at Mapplewells School in Sutton in September, which she is really excited about.”