Tim & Sam are running a marathon for Amelie

 

Amelie is the amazing, brave daughter of our friends Jay & Rose.

 

She needs life-changing surgery in the USA, followed by years of specialist care.

 

We're raising funds to help. Please can you lend a hand?

 

You can read Amelie's story below - it's an incredible cause, so close to our hearts.

 

Please do consider sponsoring us a few quid. You'll not only make a real, direct difference to a little girl's life, but you get the added bonus of seeing us attempt the Brathay Marathon on the 22nd May.  

This is one of the UK's most hilly road marathons.  It would be generous to say that neither of us is particularly well-prepared for this feat of athleticism, so this promises to be as brutally amusing as it is profoundly important.

 

 

 

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 anything you can do to support!