Today, 28th February marks #RareDiseaseDay.

February 28, 2023 9:43 am

Duchenne Muscular Dystrophy is a rare disease.

A condition that affects 1 in every 3,500 boys born.

Alex was diagnosed with this condition shortly before his 4th birthday.

We were told he wouldn’t walk beyond 12 years.

We were told a cure wouldn’t come in his lifetime.

But, progress is being made.

He’s on a clinical trial that is delaying his symptoms.

New technological advances are on coming.

Gene therapy is coming, a potential game-changer for boys like Alex.

And only because charities like Alex’s Wish are changing the landscape.

Making a difference.

We are a positive, can do family – we don’t like to see barriers, only potential solutions.

We like to live a life that is not defined by a condition.

Whilst Alex has Duchenne – he isn’t a Duchenne boy, he’s a normal human being who has a condition called Duchenne.  

He has aspirations like everyone else.

He is living a full active life despite his challenges with his muscle wasting.

Often out with his friends, studying for his A levels, he’s a serious gamer, learning to drive and has plans for his future.

This is because the lives of those living with rare diseases matter.

And it’s the reason we live everyday by our #BeMoreAlex values.

Alex knows that when life gives you lemons you make lemon meringue pie!

And we are so proud of his positive attitude to life.

If he can, then so can we.

Please help us raise awareness of Duchenne on this special day and share our post.

You can also sign-up to our #BeMoreAlex regular giving for just £7 a month.

Let’s help those living with Duchenne, live a life where their condition does not define them. Enabling them to continue being extraordinary human beings. Thank you so much for all your support 😊

#RareDiseasesDay23 #BeMoreAlex #Duchenne #Makelemonmeringuepie

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