Amelie is a beautiful, strong, and happy eight-year-old girl, yet despite her smiles she can barely walk, lives with pain and struggles with almost every aspect of life - sadly, her condition is degenerative. Although we cannot cure that, we can help to raise money to pay for surgery that could potentially transform her life.
Amelie’s story
Rose, Amelie’s mum, explained to me that until Amelie was about 18 months old, she thought 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 they started down a long path of tests and invasive investigations. Just before Amelie started school aged four, they were given the devastating news that she had been clinically diagnosed with a lifelong progressive motor neuron disorder. Specifically, a rare and cruel condition called Hereditary Spastic Paraplegia (HSP). HSP is an ultra-rare, lifelong progressive motor neuron disease estimated to affect between 0.005% and 0.1% of the population. Because HSP is so rare, there is limited help available and Amelie needs your help to help her fight this crippling disease.
HSP affects the message pathways from the brain. Amelie is most obviously affected in the muscles in her lower body, which are tight and weak; essentially, they are partially paralysed. Amelie cannot walk more than a few steps unaided, she uses a walking frame, sticks, an adapted bike and a specialised buggy for longer distances. She must have regular physio, wear ankle and foot splints and do uncomfortable stretches - every day is a painful day for Amelie. Despite all this effort, Rose says she is usually smiling and is inspiringly determined. Amelie struggles significantly to play with her friends and her little sister Saphie (4), which is heartbreaking. Amelie’s parents looked everywhere for treatment options, taking Amelie to a range of specialists and trying to do whatever they could to improve her quality of life. Most cases of HSP are progressive and no one knows how, where, or exactly when it will progress, but the likelihood is she will need a wheelchair soon and possibly permanently if they cannot make her strong. Life is very intense, for all the family, and will only get harder. Rose has taken a break from her career to care for Amelie, but she needs more than her family can give.
Treatment
There is no cure for HSP but physio, medication and surgeries can help. This surgery itself costs £60,000 and is called Selective Dorsal Rhizotomy (SDR). Amelie is sadly not eligible for this surgery in the UK, however Dr Park in St Louis Children’s Hospital, in the US (the surgeon who pioneered this surgery and has performed it over 4000 times), has accepted her and is confident it will change her life for the better. The surgery is aimed at reducing the spasticity (tightness) in her lower body muscles, allowing them to gain strength and giving Amelie the best chance of being independently mobile. After staying in the US for six weeks, Amelie will then need intensive specialist physio for at least 18 months after the surgery as well as specialist equipment to do more physio at home.
Shockingly, NHS support is extraordinarily little because she has a chronic and extremely rare condition. Amelie does not receive any regular NHS physio. Physio typically costs between £75 - £100 per hour, ideally and she needs three sessions per week minimum. After surgery she will need more. The family have recently moved house to further accommodate Amelie’s needs, now and in the future. Financial pressure is an increasing worry, so they are asking for help, which is not an easy thing for this family to do, but as all parents will know - you will do anything for your children!
How you can help
For more information on how to help Amelie search ‘hope for Amelie’ on Facebook/GoFundMe, https://gofund.me/43a4957c
Alternatively, go directly to Amelie’s GoFundMe page.