About us

The day Arvin was born was the happiest day of our lives, parents to a beautiful, handsome baby boy all we ever wanted. However in June 2018 our lives changed forever at the age of four and a half, Arvin was diagnosed with Duchenne Muscular Dystrophy (DMD) which is one of the most serious genetic diseases worldwide. It is a rare muscle wasting disease that usually affects boys where the body is unable to produce protein dystrophin that causes progressive muscle damage leading to premature death.

Nothing can prepare you to hear such devastating news it felt like our hearts had been ripped out. It takes away all the dreams you have for your child and you start grieving for the life that they should have. Arvin looks like any other normal healthy child but on the inside his muscles are wasting away, no parent should ever have to see their own child die or waste away before their eyes.

It’s been a struggle to come to terms with the diagnosis and what the future holds for Arvin but we are strong, resilient and willing to fight for Arvin.

Currently there is no cure for DMD and treatments like steroids are used to delay the progression butthis comes at the price of side-effects. The cure is getting closer and closer with rapid advances in the medical science and recent breakthroughs in gene therapy for the first time there is some light at the end of a very dark tunnel. However the boys need it now for a chance to live a healthier and longer life, it’s a race against time and we need to act now. Our mission is to raise awareness and as much money as possible to fund research in order to find a cure for this cruel disease. Help us reach our goal and eliminate Duchenne Muscular Dystrophy.

Thanks for taking the time to visit Action for Arvin

Support us:

I will be organising and taking part in a number of events including this year’s Duchenne Dash a gruelling 24 hour bike ride from London to Paris. Please help Arvin and all the other boys by donating what you can or get involved and fundraise with us.

Donate to Action for Arvin here.