Amelie Davey is hoping to get life-changing equipment which would reduce her deterioration and give her a much brighter future
Amelie Davey playing as part of the Newcastle United powered wheelchair football team
Amelie Davey playing as part of the Newcastle United powered wheelchair football team(Image: Magda Davey)
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A family is fundraising for 'brave' 13-year-old girl with a severe genetic disorder so she can be given "the gift of movement". Newcastle United wheelchair footballer Amelie Davey, who lives with her family in Stocksfield, Northumberland, has Ullrich Congenital Muscular Dystrophy - a rare condition affecting roughly one in a million people.
It was when the family, also made up of mum Magda, dad Roger and older brother Alex, moved up to the North East from London, that Amelie was correctly diagnosed. She was just four-and-a-half years old at the time, and the visit to the RVI in Newcastle felt like confirmation of something Magda has known for a while.
She said: "As a baby, Amelie was always very floppy, and never had full control of her neck, so I knew that something wasn't quite right. She was becoming weaker, and within six months of her diagnosis, she had a powered wheelchair, which she has used ever since, although this hasn't stopped her from being bright, determined and adventurous.
"We have done as much as we can with her, climbing hills and mountains, swimming with sharks and manta rays, and trying to have amazing experiences. She has always excelled when it comes to accessible sport, and has won dance competitions in the past as well."
Something which Amelie has a real talent for is powered wheelchair football, as she plays for Newcastle United's Premier League team, taking part in regional competitions as the only girl in a team primarily made up of men in their 20s and 30s. She has also been selected for the England national development teams.
Amelie Davey on the Innowalk during her two week trial of the specialist equipment
Amelie Davey on the Innowalk during her two week trial of the specialist equipment
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Amelie Davey on the Innowalk during her two week trial of the specialist equipment(Image: Magda Davey)
On the difficult times, Magda continued: "It has been very hard for us, and we have gone through some tough times, as is the case with any family who has a child with a disability. Amelie goes to Royal Grammar School, and we have had to work hard to make sure school is accessible for her, while maintaining her health at the same time.
"Sometimes, we will have to go and see her around six or seven times a night when she is struggling to sleep, and owning a restaurant and working alongside that is difficult. However, the trial that we had of the Innowalk made a huge difference to the situation that we are in."
The Innowalk is an innovative dynamic standing device which enables movement and physical activity for children who are not able to do this independently. The cost of this is £28,000, which the family are fundraising towards so Amelie can access it permanently.
Magda, 43, also said: "She was using it for around 45-50 minutes a day and her sleep quality and patterns improved. She had reduced leg swelling and better circulation, as well as increased flexibility in her hip and lower back and most importantly, she was in a happier mood and had increased energy levels.
"As she is sometimes in her powered wheelchair from 6.30am in the morning to 6pm in the evening on school days, it's crucial that she is able to stand up and not just sit in the same position all the time. It would be amazing if we could have an Innowalk for her to use regularly, as it would help her both physically and mentally so much.
Amelie Davey, 13, with her mum Magda, best friend Orla Joyce, and her mum Jill, fundraising for the Innowalk
Amelie Davey, 13, with her mum Magda, best friend Orla Joyce, and her mum Jill, fundraising for the Innowalk(Image: Magda Davey)
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"It would be truly life-changing for Amelie and for us, reducing her deterioration and giving her a much brighter future. It is the gift of movement, which is absolutely priceless, and for us as parents, it is an incredibly important piece of kit which would mean that less NHS money would be spent on her condition in the future as well."
As part of the fundraising, Magda and Amelie organised an indoor endurance cycle ride on Saturday, with her friends and their families all getting involved. Put together by Amelie's best friend Orla Joyce and her mum Jill, the event was a huge success, helping to bring them closer to the substantial total.
She added: "We want to say thank you to Orla Joyce, Jill, and their family for the help, and to everyone that has donated so far. If you would like to support us, we would appreciate it more than anything. Every month with Amelie is incredible, and this will be such an important and positive change in all of our lives."
More than £20,100 has been raised at the time of publication of their £28,000 target. If you would like to donate, go on the JustGiving website here.
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