Story
I don’t usually feel that comfortable seeking sponsorship, but I couldn’t not do something for this cause. Please read on.........
What’s the cause?
My friend and colleague Aaron’s sister-in-law, Verity (32), has an extremely rare degenerative genetic condition called MNGIE (mitochondrial neurogastrointestinal encephalomyopathy). MNGIE is a life-shortening disease. It is so rare that only 200 people have been diagnosed with it worldwide.
Verity is a much-loved mum, wife and primary school teacher.
Due to the condition’s rarity, the NHS currently offers little in the way of treatment options. Without treatment, the future looks bleak. Verity’s older sister has tragically already succumbed to MNGIE, passing away at the age of 42. Verity’s younger sister also has the condition.
Thankfully, there is a treatment available which was trialled in the UK just two years ago with really promising results for MNGIE, but for which no funding is currently available. Verity’s family have worked tirelessly and have: a neurologist to oversee the trial; obtained costs from the manufacturer to administer the treatment; and confirmed that St Georges Hospital in Tooting will be able to host Verity and her sister whilst they undergo treatment.
The treatment comes at a considerable expense, £500,000! (Not including the JustGiving fees). Understandably, Verity’s family cannot raise this sum alone and needs our help. That's where you come in.
Learn more about the family and Verity’s story here: Verity's Justgiving Page
What am I going to do?
If I’m going to seek sponsorship, I’m going to need to do something I am going to find a proper challenge, I thought.
I’ve been running for fun for the last 6 or 7 years, usually no more than 8 miles or so. Over the years I’ve done a few half marathons after which I felt pretty broken and was very happy that was as far as I needed to run.
So what’s the challenge? I’m going to do the Stroud Trail Marathon on 8th May.
It is a pretty route through the Cotswolds, but don’t be fooled, it’s very tough: 27.6 miles, of which 94% is off-road on trails, with a whopping total ascent of 1304m (4279 ft) – it’s hilly! It is going to be a big deal for me.
Training is going OK, but I need to stay focussed if I’m going to finish.
Wish me luck (come and join me?!?). And please give generously!