Duchenne UK

Strength for Stanley

Strength for Stanley is a Family & Friends Fund supporting Duchenne UK
£20,028
raised
RCN 1147094

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Story

On Friday 9th June 2017, our family's life changed forever. After attending Sydney Children's Hospital thinking our little boy was going for a check-up to see why he struggled to walk upstairs, we received the heart-breaking news our son Stanley, aged 6 at the time, was diagnosed with Duchenne muscular dystrophy (DMD). This news turned our world upside down and ripped our lives apart. As we learnt DMD spares no one. It slowly strips away the lives of those it affects. It robs children of their independence and childhood. It starts by taking away his muscles in his legs, leaving him unable to walk and wheelchair bound, followed by his arms and trunk of his body. Eventually, this will lead to breathing and heart problems, culminating with our little boy likely not to reach the age of 30.

We had moved from the UK to Australia and had been living in Sydney for 15 years, but within a few months of the diagnosis we had packed up our life and relocated back to the UK. Uprooting our two boys (Stanley, 6 and Harley, 8 at the time) from the lives and friends they knew, loved and grew up with and leaving our close friends and life we loved behind, was a difficult decision but one we felt was the right choice. Life was now about finding a cure for our son, allowing him to access the best possible healthcare and medical opportunities, as well as being close to family and being able to create memorable life experiences.

Like other families living with DMD, life is not an easy path and we face many hurdles and challenges each and every day. But our son is a fighter. He fights his illness every day. He fights his isolation from other children and the fun they make of him every day. He fights his pain and stress every day. He fights his anger and frustration every day. But he fights. And he does this with a smile, laughter and joy. He wont let this disease define him. Whilst his muscles may be weakening, he stays strong and teaches us to be strong for him.

There is no sadness without joy, no darkness without light and no despair without hope. Our hope is to help find a cure for our son and thousands of others like him, affected by this life limiting and debilitating disease. Whilst there are thousands of charities, there are few that support DMD. We need a voice for our children to be heard. And most importantly we need to raise funds and awareness for our children to live longer, healthier and happier lives. And ultimately find a cure for this life limiting disease.

Please help us combat DMD and help save the lives of our son and thousands like Stanley by donating. Every little helps. All money raised will go directly to Duchenne UK and to the projects of our choice.

Thank you for taking the time to read this and we hope that you may be able to help support us in this terrible fight.

Thank you from the bottom of our hearts.

Rob, Kirstie, Harley and Stanley

About the charity

Duchenne UK

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RCN 1147094
As the leading Duchenne muscular dystrophy (DMD) charity in the UK, we want to find effective treatments for DMD and end its devastating impact. We’re going further than anyone has before, and we’re doing it faster, because this generation of people living with DMD can’t wait.

Donation summary

Total raised
£20,027.43
+ £567.75 Gift Aid
Online donations
£2,700.43
Offline donations
£17,327.00
Direct donations
£1,280.70
Donations via fundraisers
£1,419.73

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