I’m Miryam and on the 29th June 2021, I set off to hike 1,200 miles from Land’s End to John o’ Groats. I’m raising money for Gaucher because one of my closest friends, Maddie, was born with the condition. 

Maddie inspires me everyday with her strength and determination and I’m so proud to be hiking with her on my heart

My daily average is 20 miles and the entire trip will take me around 2 months. 

If you’d like to follow my journey, I’m on Instagram @miryam_innes 📸 

This is Maddie’s  story written by her and her Mum, Tanya:

‘Born naturally with ten fingers and ten toes into a loving and caring family, with a wonderful mother and father. However, at 17 months old I became ill. It started off as a sore throat and an ear infection and within ten days I was diagnosed with a chronic genetic condition called Neuronopathic Gaucher disease (nGD)which changed my lifeforever.

Despite no one ever having heard of it, it is known as ultra-rare, affecting 1 in 100,000 live births, Great Ormond Street hospital in London was a specialist centre for Gaucher disease and cared for me until I was 18 years old, I am now looked after at the Royal Free hospital in London. 

nGD affects me in a lot of ways, when I was diagnosed, I had an enlarged liver and spleen, a very low blood count that required several blood transfusions and I had to have the majority of my spleen removed to prevent it from bursting as this would have been life threatening.  I have some neurological symptoms, but these remain mild, and I am able to live independently and am now married to Callum and expecting my first child. My future is however unknown and that can be hard to live with. 

From the outset I was determined not to let my condition  hold me back, I wanted to fit in as much as possible at school and have friends like everyone-one else. I had one to one help at school and left with 11 GCSEs. I graduated from Bath University in 2017 with a BSC in Social sciences and a Master’s in international development and social justice in 2018. This was achieved with a lot of determination and support. 

Growing up with nGD was very challenging, regular treatment, numerous hospital visits, periods of time in a wheelchair due to bone crisis and bouts of anxiety and depression. However, throughout this I had access to the UK Gauchers Association, the only charity supporting Gaucher patients and their families in the UK. Through the work of the charity, it has been possible to bring patients and families together, improve education and have specialist help in accessing benefits and other areas of social and educational care. 

nGD is a progressive neurological condition and there is currently no treatment that crosses the blood brain barrier to halt or prevent deterioration, sadly today many patients with nGD lose their life as their disease is so severe, it is therefore vital that we find new medicines that will improve patient’s quality of lives and give them a future.’