A mum of two is running the London Marathon after vowing never again, for a family friend with a rare condition.
Heather Curtis has also organised a grand ball in Aylesbury as part of her fundraising appeal for The Callum Smith Trust and Muscular Dystrophy UK.
Callum, who attends Stone Church of England Combined School in Aylesbury, with her daughters Eleanor and Lucy, has Duchenne, a severe form of Muscular Dystrophy.
Duchenne is a severe muscle-wasting condition which causes muscles to weaken and waste over time, leading to increasing disability.
It is caused by genetic mutations on the X chromosome which prevent the body from producing a vital muscle protein, dystrophin, which is needed to build and repair muscle.
Most people with Duchenne muscular dystrophy are diagnosed by the age of five and could be using a wheelchair by the time they are 12.
Heather said: “Duchenne is a serious progressive muscle weakness that will eventually weaken his lungs and heart muscles and cause premature death by his mid-twenties.
“Callum has continual assessment health checks and physiotherapy but eventually will become locked in his own body. I cannot stress to you how deeply upsetting this is to watch Callum deteriorate. The reality of what this young boy faces is soul destroying.”
For the past 18 months Heather has been raising money for Muscular Dystrophy UK, to aid the support necessary to provide care and attention for those families that suffer with this illness, and to ultimately find a cure.
She added: “I ran my first marathon in April last year which took me to running the streets six times a week throughout the winter months, running over 550 miles in less than four months at 6am in the morning.
“I vowed never to do this again, until this year when once again I am running the Virgin London Marathon on April 24, this time raising money for both Muscular Dystrophy UK and the Callum Smith Trust.”
Heather has been supported by husband Jason, and daughters Eleanor and Lucy and she added: “Without their support I would not be able to achieve all that I do.”
The charity ball she is organising is being held at The Holiday Inn, Aylesbury, on Saturday, May 21, 7pm until late.
Tickets are £50 per person, with tables of ten available, and includes Prosecco on arrival and three-course meal with wine. There will be live music from Rob Oakley and DJ and a raffle.
Dress code is black tie with hint of orange. For details and to book tickets contact Heather Curtis on 07769 259317 or email firstname.lastname@example.org