In 2020, after several years of doctors visits and tests, my husband received a diagnosis of Alexanders Disease. This is a very rare (1 in 1-10 million) condition which affects his nerves and muscles; because it is so rare there is very little research into it and no treatment. We got the diagnosis via letter, as this was during lockdown, and although we see the consultants every 6-12 months, there is very little they can do.
With these rare conditions there is very little information around – even Google doesn’t help much. Every few months we see if there is any more information around and at the end of last year we finally discovered that his condition is part of the leukodystrophy family and found Alex TLC.
Every contact we have had with them has made us feel less alone and that there are people out there who care and want to help. I wanted to raise money so that they can continue to do the same for anyone affected by leukodystrophies as (in our personal experience) the medical professions don’t have much to offer. Having a rare condition can be very lonely and isolating, and also scary as there is no information on the progression of the disease.
Why a bungee jump? I know that a bungee jump to a lot of people is something exciting that they voluntarily do. For me? Not quite so much. I think that because I was asking people to donate money (even though it was actually for an amazing cause, not for me) then I had to do something I didn’t want to. Sky dive? I’d love to. Wing-walk? I’d love to. However, just the thought of bungeeing almost gave me a panic attack.
Also, for those who know me, it brought an additional two challenges – 1) wearing trousers – my usual dress or skirt outfits didn’t suffice and 2) having my photo taken to prove I did it!
I’d like to say that it was an amazing experience, but in fact it was absolutely terrifying! However, completely worthwhile for the amazing outcome of £2691 raised!