My Story

Instagram @ben_the_birdman

-I'm a British Airways Longhaul Captain and running the London Marathon in fancy dress. It's been 37 years since my previous one!

-Duchenne is the severest form of muscular dystrophy 

-There is no cure

-it affects 1 in 3500 boys

-I want to raise as much as I can for this great charity who do such fantastic work in supporting individuals and families whose lives have been impacted by Duchenne Muscular Dystrophy (including our own).

-Harry (our son) is currently obsessed by Parrots, Pirates and Peter Pan so I chose to make a parrot costume! 😀 Click the link below. 

BBC NEWS ARTICLE 

The 🦜 PARROT OUTFIT 😀

INSTAGRAM

THE CHARITY ACTION DUCHENNE

Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which prevent production of a vital muscle protein called dystrophin. The lack of dystrophin makes muscles more susceptible to damage and leads to muscle wasting over time. People living with Duchenne muscular dystrophy experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are eventually affected and most will require a ventilator in their twenties; life expectancy is around 30 years but has improved with palliative care developments.

There is currently no cure.

Why it's so close to me

When our son Harry was diagnosed with Duchenne Muscular Dystrophy in 2019 we were utterly devastated and didn't know where to turn. We felt isolated and alone with no support or sense that anyone really understood. Making contact with Action Duchenne provided a lifeline. They understood, they were living our experience too and they helped us find hope and positivity. They were there for us when we needed them and have introduced us to the Duchenne community through conferences and activities. 

Research to find new treatments and hopefully, one day, a cure for Duchenne is vitally important but finding the understanding and support to help us get through each day is invaluable. 

With my fundraising I would like to help keep the charity expanding  and help other families and children through the difficult stages of life with Duchenne.

Thank you,

Ben