LITTLE Grace Catt will soon have the opportunity to play free for the first times in her life thanks to Central Recorder, which was Sunday.
Three-year-old was treated by the NHS for a condition that left him with a severe muscle-wasting condition. However, he struggled to maneuver the heavy wheelchair provided by NHS.
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Central Recorder arranged for her Sunday to receive a lightweight version which will allow her to play almost without any restrictions.
Last night Grace’s dad Luke, a 33-year-old mortgage adviser, said: “Thank you to Central Recorder on Sunday.
“It’s perfect timing, as Grace is about to start pre-school and it takes away a lot of the worries, knowing she’ll have as much independence as we can possibly give her to start the next phase of her life.
“Because she has advanced so well after the treatment, if she trains herself, her muscles will get stronger and stronger.
“And with this new chair we know she can propel herself and go from room to room without any issues.”
Whizz-Kidz revealed this week that approximately 75,000 UK children need a wheelchair in order to move around. But many of them don’t get one from the local services that meets their needs.
Whizz-Kidz works together with young wheelchair users, their families, and to provide the appropriate wheelchair or equipment.
And disabled children’s charity Newlife strives to get the right equipment at the right time to children who need it.
After a Sun on Sunday appeal, Newlife told us about Grace and how her parents Gemma and Luke, who now work part-time to care for her, were struggling to afford the £3,300 lightweight replacement she needed.
Barmaid Gemma, 35, told us: “We never expected her to be as independent as she is now.
“She can do things for herself, and with the lightweight wheelchair she will be able to follow me around the kitchen, help me with the washing and have her independence, which is so important.
“We want her to be able to do everything she possibly can within her limits.”
Grace was diagnosed at four months with type-one spine muscular atrophy, a rare genetic condition that causes weakness in the muscles and breathing problems.
There is no cure for her condition, and her life expectancy was two years.
Grace was placed in a clinical study for a drug which helped. Last summer Zolgensma, a gene therapy medication, was approved for use by patients. Grace was among the few children to get it.
Luke, Tupton Derbys, stated: “We are still only five months in, but her fine motor skills are so much better, like holding a pen and playing with Lego.”
Mum Gemma said: “The NHS’s care of Grace has been absolutely incredible and there are no words to express the depth of gratitude we feel.
“Without this treatment she couldn’t have done as much as she is achieving.
“It’s the closest thing we have found to a cure and we have noticed such a difference with her.”
Newlife’s Campaigning and Public Affairs Manager Clare Dangerfield said: “Thanks to Central Recorder on Sunday, Grace will now receive her wheelchair soon and she can continue to make the most of her life.”
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