Hiking the Dales Way for Amelie

This July, we (Matt, Mickey, Torsten, Rob, Rosanna, Dan, Andy, Jay, Simon and Stephen) will be hiking the Dales Way to help raise funds in support of our friend and colleague Jay’s daughter, Amelie.

 

We'll be walking a total of 94 miles, from Ilkley in West Yorkshire to Windermere in Cumbria, over just 4 days. That’s the furthest many of us have attempted to walk in one go, so we’ll need all the support we can muster!

 

Amelie is the amazing, brave daughter of Jay & Rose. She has a rare, degenerative condition, and has been selected for life-changing surgery in the USA to improve her quality of life.

 

We’re raising funds to support this, and the ongoing care she’ll need post-op.

 

Anything you can do to help would be hugely appreciated.

 

You can read Amelie’s story below...

 

 

Amelie's Story

 

Amelie Round is a 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.

 

Amelie has been diagnosed with 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. Her family needs your support to help her fight this crippling condition.

 

Whilst there is no cure for HSP, physio, medication and surgeries can really help. Amelie's parents, Jay and Rose, have looked everywhere for treatment options, taking Amelie to see a range of specialists, trying to make her life better.

 

The good news is that 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. Following this surgery, Amelie will need many years of private therapy and support to get the most out of life.

 

 

More about this surgery, from Amelie's family...

 

 

 

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!

 

Thanks for reading and for anything you can do to support!