In school, I support a little guy, called Samson, who is 9 and lives with Duchenne muscular dystrophy. 

What is Duchenne?

Duchenne muscular dystrophy is a rare, muscle wasting condition which occurs mainly in boys and is often diagnosed around the age of 2 to 4.  

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 no cure.

The background 

This past year, Duchenne families have faced the most difficult situation, to stay safe at home shielding, risking irreparable muscle damage. Damage which many children, young people and adults living with Duchenne have experienced during lock- down. 

Why Action Duchenne?

I am walking 790 km raising money for Action Duchenne, an amazing charity which supports everyone living with Duchenne in the United Kingdom. The work they do is life-changing, funding research, supporting families and campaigning for equality for disability. 

Please help me support this wonderful charity by donating, and ticking the GiftAid box. 

What your donation could mean

• £20 Could pay for a newly diagnosed family to receive an initial support telephone call and vital information pack.
• £50 Could fund one full hour of research.
• £100 Could contribute to bringing a Duchenne science education event to our families across the UK

THANK YOU x Stella