Amelie is our beautiful, brave and happy little girl. 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 can’t cure that, we can raise money to pay for surgery that could potentially transform her life…
We had a wonderful pregnancy and birth with Amelie and, until she was about 18 months, we 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 2 years old we started down a long path of tests and invasive 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 aged 4, we were given the devastating diagnosis of 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 disorder estimated to affect between 0.005% & 0.1% of the population. Because HSP is so rare, there is limited help available for Amelie & we need your help to help her fight this crippling condition.
How Amelie is affected
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. Her muscles are constantly overworking and tightening which is exhausting for her, causes pain and is distorting her beautiful body.
We are fighting against these tight muscles, but we are losing...
Amelie now cannot walk more than a few steps unaided. She cannot run, jump, hop or do most of the things her peers can. Amelie falls over at least 5-10 times a day, she constantly has new bruises, grazes and cuts… despite this you will nearly always see her smiling!
Amelie uses a walking frame, sticks, an adapted bike and a specialised buggy for longer distances. Everyday is a painful day for Amelie she must have physio, wear ankle and foot splints and do uncomfortable stretches. Despite all this effort, she still struggles significantly to play with her friends and her little sister Saphie (4), which is heart-breaking.
Amelie is also affected cognitively, she is academically, socially and emotionally behind. Her fine motor skills are also impacted and Amelie struggles to hold a pen or cutlery and can't dress herself. Everyday tasks are a real struggle for her and we have to help her with most basic daily tasks. It is very unlikely she will ever be able to live independently.
Sadly, in most cases HSP is progressive - we don't know how or when it will progress, but the likelihood is she will need a wheelchair soon and permanently if we can't get her stronger!
Life is very intense, for all of us, and will only get harder. I have taken a break from a career I trained for a long time for and enjoyed, to care for Amelie, but she needs more than we can give!
There is no cure for HSP. Physio, medication and surgeries can help though. As parents we've looked everywhere for treatment options, taking Amelie to see a range of specialists, trying whatever we can to make her life better.
Amelie has been accepted for an operation in the USA aimed at reducing the spasticity (tightness) in her lower body muscles, allowing them to gain strength. This would give her the best chance of being independently mobile, being pain free and living a better life. This surgery 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 is confident the operation will change her life for the better.
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 fulltime, we will go for it with everything we have!
Why we are asking for help
The surgery itself costs c£60,000 and we as a family will need to go to the US and stay in the country for around 6 weeks for surgery and her post surgery rehab. She will then need intensive specialist physio for at least 18 months after the surgery as well as ongoing regular physio for the rest of her life. We also need to buy specialist equipment to do more physio at home.
Although we are very grateful for the NHS support she's had from Leeds, York and Harrogate, it is quite limited because she has a chronic condition and Amelie does not receive any regular NHS physio. We arrange and pay for all her physio and other support privately. Physio typically costs between £75 - £100 per hour and she needs to do a minimum of 3 sessions per week. Post-surgery she will need more and we will need to travel significantly for some of her therapy. Financially and logistically there is a lot of pressure on our family which will increase significantly post-surgery.
We have come to realise that our future as a family is not going to be what we had thought/hoped. We are significantly adapting our family home to meet Amelie’s needs now and in the future. This, and me stopping work, has put more financial pressure on us but we don’t want finances to stop us giving Amelie the hope she deserves!
So, we are asking for help, which isn’t an easy thing to do but as all parents will know - you will do anything for your children and we really need your help to give Amelie hope for a better future.
When the weather and Covid permits we will be running fundraising events but for now, if you can donate any amount at all towards her surgery and physio costs that would be incredible! Even if you can just share this post and link that would be a huge help!
Thank you for reading this and to all our friends, family, school, physios and consultants who have already been supporting us.
Love Rose, Jay, Amelie and Saphie xx