Leeds schoolgirl Amelie Round to fly to America for pioneering surgery after family raise incredible £60k
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Eight-year-old Amelie Round was diagnosed with Hereditary Spastic Paraplegia (HSP) four years ago, a lifelong and progressive condition which affects less than 0.1 per cent of the population.
Even the smallest movements can cause Amelie pain and she is unable to walk unaided, using a walking frame, sticks, an adapted bike and a specialised buggy for longer distances.
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Hide AdHer parents, Jay Round and Rose Moore, launched a fundraising campaign earlier this year to help Amelie get Selective Dorsal Rhizotomy (SDR) surgery in the US.
She is not eligible for the surgery in the UK, but doctors at St Louis Children's Hospital are confident the operation will change her life for the better.
The family, who live near Wetherby, have already raised an incredible £60,000 of their £100,000 target and have been given an operation day of May 19 - much earlier than expected.
“We didn’t expect to raise as much as we have, as quickly as we have," Jay, 39, told the Yorkshire Evening Post.
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Hide Ad"We thought £10,000 would be the starting point. We’ve been so busy trying to prepare for the operation, so we don’t have that much time to do fundraising.
"We haven’t broken the severity of the operation to Amelie yet, that’s the next thing we’re going to have to do."
Amelie is undergoing physio to get her muscles as strong as possible before the surgery.
The £100,000 raised will cover the cost of the operation and accommodation for eight weeks while she recovers, as well as further intensive physio which she will need for at least 18 months following the operation.
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Hide AdThe surgery could ease or significantly reduce the tightness in her body, but it's expected that she won't be able to walk for a time after the operation.
Jay said: "Every day, she’s living in pain because all her muscles are tight all the time.
"With every single movement, she has to work against her body and against that tightness, just to do basic things like get dressed, hold a pen or drink from a cup.
"It makes her really tired. So hopefully everyday things will become a bit easier for her, she won’t have to fight against herself as much."
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Hide AdMore than 1,000 people have donated to Amelie's GoFundMe page after her story hit the headlines; the family are big Leeds United fans and the club has got behind the campaign.
Her mum and dad have downloaded an extract of all the heartwarming messages left for her, which they will turn into a memory keepsake.
Jay and two of his friends will take on the Lake District Five Peak challenge on April 24-25, followed by a Zumba fun day at the Engine Shed, Wetherby, on May 1.
The family will then prepare to fly to America on May 16.
"It still feels hypothetical," Jay added.
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Hide Ad"It’s so surreal all the support we’ve had. It’s been a whirlwind, but as soon as we get in the taxi and lock the door, I think it will hit us hard.
“It’s a lot to process and we’ve got to keep our emotions in tact with the kids. Rose and I will need to find some time beforehand to process all that.
“It’s not the sort of operation that has a definite, clear outcome. There’s a sense of jeopardy involved.
"But we’ve got to do something for her - and this is the best thing we can do.
“We’re unbelievably thankful. It genuinely will change her life and there’s no way we could have done it without everyone’s support."