Story
A Million Strides: Running the TATA Ultra Marathon for Anya and her Ultra Rare AHC Medical Condition
Hello everyone,
Thank you for taking the time to drop by my JustGiving page. I am taking part in running the TATA Ultra Marathon held on the 25th of Feb 2024 in Lonavala near Pune, Maharashtra India for Anya Behl and her ultra-rare medical condition called Alternating Hemiplegia of Childhood (AHC).
We hope you will be able to support me with a donation but if you can’t please help spread awareness of Saumya's story on your social media pages
Anya's Ultra-Rare Medical Condition
AHC is a "one in a million" disease. It is due to a chance, non-inherited mutation in DNA which chiefly affects our so-called "sodium pumps". All cells in our body rely on millions of these micromolecular ion pumps but they are particularly crucial for nerve cells. There is no cure for AHC.
It is ultra-rare (1 in a million) and Anya is the only child in Edinburgh with it and the only child with the genetic mutation for this condition in Scotland.
The only treatment for Anya is to try to manage the ever-changing mix of symptoms. We give extra medications rapidly as soon as her symptoms start. This has, over the last 2 years prevented her from needing Intensive Care, but it is exhausting, and parents are always on-call 24/7 without a break. She takes medications across the day – 22 interventions of medications in 24 hours on a ‘good’ day and more when she has neurological symptoms. She can’t tolerate high medication doses, so they have to be spread throughout the day to reduce any side effects. Anya's family continue to support research and education in the hope that a treatment will come soon to improve her, and others with the condition, and quality of life.
This Monday the 15th of January is the start of AHC Week which leads to the 18th of January which is the Alternating Hemiplegia of Childhood (AHC) Day. This is where I plan to run for Anya and all the AHC Warriors.
The TATA Ultra Marathon
From spending time with myself, pushing my boundaries, health benefits, being a part of a community and much more. It helps me clear my mind and prepares me for the day ahead. The best way to make my love for running more meaningful is to contribute to society - to run with a purpose. I try to dedicate some of the races I sign up for to a meaningful cause. That way the sport is not just about myself but goes beyond “self”. This works as a win-win because it makes me show up and not give up and the cause benefits from the miles and effort I put in. My runs automatically become more purposeful.
I will attempt my first 50 km race on Feb 25 in the Tata Ultra Marathon on a hilly course. It is a mammoth task for me today and it will be on that day too. I am putting in whatever I can to raise funds for Anya
Team members (1)
- £468 of £1,000
