A schoolgirl with a rare condition wants to fulfil her dream of walking down the aisle as a bridesmaid.
Amelie Round was diagnosed with Hereditary Spastic Paraplegia (HSP) - which affects her lower body muscles, causing them to be tight 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, US, that will give her the best chance of walking unaided - but the family need £100,000.
The eight-year-old dreams of being able to walk independently and joining 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 for their ten-year anniversary after the operation.
Rose said: “After the surgery, the hope is the girls would be bridesmaids.
“Amelie could independently walk down the aisle, which is something she couldn’t do now.”
The pair were delighted when they welcomed their first child into the world eight years ago.
Until Amelie was 18-months old, they believed their daughter was developing perfectly.
However Amelie did not walk like her other friends and appeared to be very unsteady on her feet, prompting a long road of tests and invasive investigations.
By age four, she was given the devastating diagnosis of a lifelong motor neurone condition known as HSP.
Rose said: “It's a rare condition that affects only around 0.005% of the population"
"The condition affects her lower body muscles, causing them to be tight and weak."
“It makes it incredibly difficult for her to walk and balance is a real struggle, if I leave her for a second, she just falls.
“She also has weak motor skills. There isn’t really one thing which is easy for her.”
After the news and arrival of their second child, Saphie, Amelie and Jay felt overwhelmed and as they adapted their lives and home to Amelie’s needs.
The pandemic also had a significant effect on the family and Rose had to give up her job as a solicitor to take care of the girls.
Rose said: “It’s really exhausting because we have to watch her constantly.
“There’s the emotional side too. It’s really hard watching her struggle.”
Although she attends four physiotherapy sessions a week, the eight-year-old lives in constant pain.
Rose said: “She gets upset because she doesn’t understand why she has to do her stretches.
“She doesn’t understand why her mummy is making her do something that hurts her.”
Because her condition is so rare, Amelie’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, Amelie has to use a walking frame and wears ankle splints. This exhausts her and she struggles significantly to play with her friends and little sister, who she adores.
Amelie is sadly not eligible for this surgery in the UK, however Dr Park in St Louis Children's Hospital, Missouri is confident the operation will change her life for the better.
Rose said: “For a lot of children it’s absolutely life changing and has miraculous results.
“Ultimately it’s going to sever the nerves in her spinal cord – the ones that are telling the muscles to be tight in her legs.”
“There will be a long rehabilitation process afterwards, but we are hopeful and optimistic.”
However, the procedure is costly. Dozens of generous donors have contributed to a GoFundMe page for the brave girl.
£100,000 is needed to fund the procedure and give Amelie the opportunity to live her life as independent as possible.
Her family are now hoping to raise money to give their young daughter this chance of to transform her life.
So far, nearly £37,000 has been raised and the family are overwhelmed with the support and generosity of their friends.
To reach their goal, the eight-year-old’s family and friends plan to participate in some active fundraisers in Spring.
Rose said: “We like to do a lot of community-based stuff and things Amelie can be involved in.”
“We even want to do a danceathon then Amelie can join in in her own way”
“She would love to perform in a dance show one day.”
