Amelie Round, who attends Tockwith Primary School, was diagnosed with Hereditary Spastic Paraplegia (HSP) at four years old when her parents spotted that she was not walking like her friends when she reached two years old.
She underwent numerous tests and investigations and just before she started school, she was diagnosed with the life-changing disease.
Hereditary Spastic Paraplegia (HSP) is an ultra-rare, lifelong progressive motor neurone disease, estimated to affect between 0.005% & 0.1% of the population.
The disease affects the message pathways from the brain and Amelie is mostly affected in the muscles in her lower body, which are tight and weak; essentially, they are partially paralysed.
As HSP is so rare, there is very limited help available for Amelie and her family need support from the general public to help her fight this
Rose Moore, Amelie’s mum, said: “We had a wonderful pregnancy and birth with Amelie and, until she was about 18 months, we thought that everything was developing perfectly.
“However Amelie did not start to walk like her peers and seemed very unsteady on her feet so at around two years old, we started down a long path of tests and investigations, all of which came back as ‘normal’.
“Having ruled out numerous possibilities, much to our relief at the time, just before she started school at four years old, we were given the devastating news that she had been clinically diagnosed with a lifelong progressive motor neurone disorder.”
Amelie uses a walking frame, sticks, an adapted bike and a specialised buggy for longer distances.
She must undergo regular physiotherapy, wear ankle and foot splints and do uncomfortable stretches - making everyday a painful day for Amelie.
Despite all of this effort, she still struggles significantly to play with her friends and her little sister Saphie, 4, which is heart-breaking for her parents to see daily.
Unfortunately there is no cure for Hereditary Spastic Paraplegia, however physiotherapy, medication and surgeries can help somewhat.
Amelie’s parents have looked everywhere for treatment options, taking her to see a number of specialists, trying whatever they can to make her life better.
Amelie has recently been accepted for an operation in the United States of America, aimed at reducing the tightness in her lower body muscles, allowing them to gain strength.
This would give Amelie the best chance of being independently mobile, being pain free and be able to live a better life.
Rose added: “The surgery is called Selective Dorsal Rhizotomy (SDR).
“Amelie is sadly not eligible for this surgery in the United Kingdom, however Dr Park in St Louis Children’s Hospital in the United States of America, the surgeon who pioneered the surgery and has performed it over 4000 times, has accepted Amelie and is confident that it will change her life for the better.”
The surgery costs £60,000, with the family having to spend six weeks in America for surgery and rehabilitation.
To help with the expenses, a Go Fund Me Page has been set up to try and raise £100,000, and donators have already put their hands in their pockets and have already managed to raise just shy of £65,000 so far.
Rose added: “There are of course risks with a surgery this major and with the unknown nature of her condition, so it is not a decision we have come to lightly.
“But if there is any chance of making life easier for her and keeping her out of a wheelchair full time, then we will go for it with everything that we have.”
“I want to say thank you to all of our family, friends, school, physio's and consultants who have already been supporting us.”
How can you help Amelie fight Hereditary Spastic Paraplegia?
The Zumbathon for Amelie will take place on Sunday, May 1 at The Engine Shed in Wetherby from 10am till 3pm, where people are encouraged to come along and enjoy a day full of fun before Amelie travels to America for life-changing surgery.
There will be lots of fun activities to take part in, including adult and children’s Zumba classes every hour, entertainment by Professor Fiddlesticks, face painting, nail painting, tattoos and much more.
There will also be a raffle and tombola, along with refreshments throughout.
There is no entry fee required or set prices as people are asked to donate as much or as little as they like.
The money raised will go towards helping Amelie and her family cover the costs of her life changing surgery as she continues to fight against this disease.
Amelie’s family, mum Rose Moore, dad Jay Round, sister Saphie and of course Amelie, hope to see as many people there as possible and enjoy a fun day out ahead of their trip to America.
You can donate by heading to https://www.gofundme.com/f/Hope-for-Amelie