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Lewis Rees  is 13 years old and has Duchenne Muscular Dystrophy. He was diagnosed at the age of 6 weeks through Newborn screening. Lewis is no longer able to walk and relies on a wheelchair to get around. He is an avid gamer with a particular love of “Mine Craft”.

Duchenne Muscular Dystrophy is a rare genetic condition caused by a mutation in the dystrophin gene. Dystrophin is a protein essential for muscle health  and with out it muscle cells become damaged causing muscle wastage. There is currently no cure for the condition and most boys are treated with Corticosteroids.

Children born with this condition will often be late reaching physical milestones and may have problems climbing, running and jumping. They may suffer more falls than other children and will tire easily.

Those living with Duchenne experience  progressive muscle weakness and usually lose the ability to walk and require a wheel chair from early teens.

The heart and breathing muscles are also effected and most will require a ventilator in their twenties. Life expectancy is around 25-30 years but can be improved with good long term care.

Action Duchenne is a charity that:

·         Funds research into developing effective treatments and supports clinical trials

·         Educates and raises awareness of the condition

·          Provides support to those who are living with Duchenne and their families.

·         Strives for a more inclusive society by promoting the importance of human equality, day to day acceptance of disability and accessibility for those with Duchenne.

Lewis and his family have been supported by Action Duchenne since his diagnosis. The charity have provided information about the condition, arranged events for families and put Lewis and his family in touch with other boys living with the same condition. The charity also provides hope that there will one day be an effective treatment or cure for all boys living with Duchenne.

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