8-year-old schoolgirl with rare disease dreams of walking down the aisle as a bridesmaid

There is now new hope for Amélie after she has been offered a life-changing surgery that will give her the best chance of walking unaided and without her walker.

Amélie Round suffers from hereditary spastic paraplegia

A schoolgirl with a rare disease wants to fulfill her dream of walking down the aisle as a bridesmaid.

Amélie Round was diagnosed with hereditary spastic paraplegia (HSP) – which affects the muscles in the lower body, making them tense and weak – four years ago.

After years of struggling, there is now new hope for Amelie as she has been offered life-changing surgery in Missouri, USA that will give her the best chance to walk unaided – but the family needs £ 100,000.

The eight-year-old girl dreams of being able to walk independently and join her sister, Saphie, four, as a bridesmaid for her parents.

Her parents, Rose Moore, 37, and Jay Round, 39, of Hessay, York, plan to renew their wedding vows on their tenth anniversary after the operation.

Rose said: “After the operation, the hope is that the girls would be bridesmaids.

“Amelie could walk down the aisle on her own, which she couldn’t do now.”

The couple were delighted when they welcomed their first child into the world eight years ago.







Amélie in her bridesmaid dress
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Picture:

Mercury Press & Media)


Until Amélie was 18 months old, they thought their daughter was developing perfectly.

However, Amélie did not walk like her other friends and seemed very unstable on her feet, resulting in a long road of invasive testing and investigation.

At the age of four, she was diagnosed with a devastating lifelong motor neuron disease known as HSP.

Rose said: “It is a rare disease which affects only about 0.005% of the population”

“The disease affects the muscles in her lower body, making them tense and weak.”

“It makes it incredibly difficult for her to walk and the balance is a real struggle, if I let her for a second she will fall.

“She also has poor motor skills. There isn’t really one thing that is easy for her.







Amélie (right) with her sister Saphie (left)
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Picture:

Mercury Press & Media)








Amélie Round running with her walker
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Picture:

Mercury Press & Media)


After the news and the arrival of their second child, Saphie, Amélie and Jay felt overwhelmed and as they adapted their life and their home to Amélie’s needs.

The pandemic also had a big effect on the family, and Rose had to give up her job as a lawyer to take care of the girls.

Rose said: “It’s really exhausting because we have to watch her constantly.

“There is also the emotional side. It’s really hard to watch her struggle.

Despite attending four physiotherapy sessions per week, the eight-year-old girl lives in constant pain.

Rose said: “She gets mad because she doesn’t understand why she has to do her stretches.

“She doesn’t understand why her mom is making her do something that hurts her.”







Saphie with sister Amélie, daddy Jay and mommy Rose
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Picture:

Mercury Press & Media)


Because her condition is so rare, Amélie’s parents struggled to find much information online.

Rose said, “After the diagnosis, we joined so many online forums and support groups to ask questions.

“I don’t know what we would have done without them.

Every day, Amélie has to use a walker and wears ankle braces. It exhausts her and she finds it very difficult to play with her friends and her little sister, whom she adores.

Amelie is unfortunately not eligible for this operation in the UK, but Dr Park at Children’s Hospital in St. Louis, Missouri is convinced that the operation will change her life for the better.

Rose said, “For a lot of kids this is absolutely life changing and has miraculous results.

“Ultimately, it’s going to cut the nerves in his spinal cord – the ones that tell the muscles to be tense in his legs.”

“There will be a long process of rehabilitation afterwards, but we are hopeful and optimistic.”

However, the procedure is expensive. Dozens of generous donors have contributed to a GoFundMe page for the brave girl.

£ 100,000 is needed to fund the procedure and give Amélie the opportunity to live her life as independently as possible.

Her family is now hoping to raise funds to give their young daughter this chance to transform her life.

So far almost £ 37,000 has been raised and the family are overwhelmed by the support and generosity of their friends.

To reach their goal, the eight-year-old’s family and friends plan to participate in active fundraisers in the spring.

Rose said, “We like to do a lot of community things and things Amélie can be involved in.”

“We even want to do a danceathon so Amélie can join in in her own way”

“She would love to perform in a dance performance someday.”

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