Have you met Alex and his brother Mark? They’re long-time supporters and fundraisers for Metabolic Support UK, and they have been at it again raising awareness for us and inherited metabolic disorder community over the weekend.
Alex lives with ASA (Argininosuccinic Aciduria) and has shared their story with us:
“In 2006 I was unwell just after my 15th birthday. I caught the flu; I didn’t eat all day. I came home and had shepherd’s pie then I was sick in my sleep and mum called for ambulance. They came, said I was in a deep sleep. Then mum called them again. We had an on-call doctor call for an ambulance that took us to A&E. Then from there, a CAT (Children’s Acute Transport) ambulance transferred me to Great Ormond Street Hospital.
I was in a coma for a couple of days. They found out what was wrong with me: it was called argininosuccinic aciduria (ASA), a Urea Cycle Disorder (UCD). I am fundraising for that reason. I am on medication for it and on a low protein diet. I enjoyed my fruit and vegetables and now I eat even more fruits and vegetables. I enjoy climbing that is why I picked a climbing challenge for fundraising. I enjoy sports and my low protein diet doesn’t stop me doing anything, I just enjoy my life.”
Alex and his brother Mark climbed for four hours, raising funds and awareness for Metabolic Support UK on Saturday the 3rd of August 2024.
They tackled bouldering routes, pushing their limits, and cheering each other on. This wasn’t just about physical strength, it was about resilience, determination, and standing together for a cause they deeply care about.
Alex let us know how the day went:
“It was a good day. I enjoyed climbing with my brother Mark today. We was cheering each other on with climbing. It was nice being at Mile End climbing today with my mum too. It is my pleasure to do awareness for inherited metabolic disorders.”
A huge thank you to Alex and Mark, and all those who supported their climbing!
Their online donation page is going to remain open for a few days if you would like to celebrate and support their fundraising with a donation of your own:
Alex lives with ASA (Argininosuccinic Aciduria)
This is a Urea Cycle Disorder that affects the way the body breaks down protein. In ASA, the body lacks an enzyme called argininosuccinate lyase. This means the liver cannot convert waste protein into urea as fast as normal. It can lead to high ammonia levels which can be extremely dangerous.
- To learn more about ASA visit our disorder page
- To learn more the dangers of high ammonia visit our Think Ammonia! Campaign page
