In my family we have Sebastian who is 2 years old with Duchenne Muscular Dystrophy – a progressive muscle wasting disease. Me who is a manifesting carrier of Duchenne.

People with DMD are missing a protein called Dystrophin, which repairs the muscle. So Sebs muscles are essentially damaged everytime he uses them.

Seb will lose the ability to use his lower limbs first, confining him to a wheelchair, followed by the upper limbs. The diaphragm, which is used to assist breathing is also a muscle, as is the heart. People with Duchenne have an average life expectancy of 27 years.

Seb is 2 years old now. He can’t walk very far and tires very easily and eventually his mobility will deteriorate and he will shortly be starting steroids and another medication called translarna for the rest of his life to keep him on his feet for as long as we can.

Life is very difficult for us. Everything is a challenge. Everything. But the worst part for Jack and I, is that we know that one day we will have to bury our son. And that isn’t right. It’s not fair. It is heart breaking and soul destroying. And the most frustrating thing is that there isn’t a single thing we can do about it. I would give my life for him, but I can’t. And I have to carry that – and it’s hard. He’s our little sunshine, our gorgeous boy.

Not for sympathy...just awareness. But we really do appreciate you taking time to read this ❤

#duchenne #duchenneuk #duchennemusculardystrophy

About Action Duchenne-

Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.

We have three core objectives:

- Funding research for everyone living with Duchenne

- Cutting-edge science education programmes

- World-class support for Duchenne families

While we hope that research and clinical trials will one day lead to a treatment, or cure, for Duchenne, we believe it is vital to support families living with the condition today. We support families from diagnosis through their whole journey.

All Donations go directly to Action Duchenne.