I am doing the Jenson Button Triathlon on 17th July to raise funds for Elsie Novell. I am not fit nor have I don't a triathlon before! But I do have a very good the reason to do this. Elsie.
Elsie suffers from an extremely rare genetic neuromuscular condition called Spinal Muscular Atrophy type II. This means that Elsie will never be able to walk and her muscles will gradually become weaker, eventually wasting due to lack of use. There is currently no cure or treatment for this condition.
SMA is a severe, degenerative disease which will, in time, affect the
neck, arm, shoulder, hands and most importantly her ability to eat,
swallow and breathe. More information about this condition can be found
Whilst there are currently no treatments or cures available, there are
a number of things that can be done to improve Elsie's care and quality
of life, ensuring that she is as mobile as she can be for as long as
she can be. All of these things are very expensive, which is why she needs