Family and Friends Funds

Moving Muscles for Marcus

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About us

Marcus is such a kind soul, he can be very quiet but don’t let that fool you as he can be very loud when he gets to know you. He has a wicked sense of humour and makes me laugh so so much! He loves Fortnite and Minecraft (basically he just loves playing on his PS4). He likes watching Youtube, particularly Dan TDM and said he wants to be a YouTuber when he is older, probably like a lot of boys his age. HOWEVER, Marcus isn’t like most boys his age…

July 22nd 2009 was the most amazing day of my life! My rainbow baby, our gorgeous and beautiful son Marcus was born. He was perfect in every way!

Marcus hit all his physical milestones well before the average age, BUT fast forward to 2015 at the Year 1 sports day, we noticed Marcus was slower than his classmates. We just put it down to him being smaller than the others in his year.

Later that year a friend from the pre school days contacted me and said her son was diagnosed with a condition I had never ever heard of – “Duchenne muscular dystrophy” and even after she told me I will admit to being a little ignorant and thought it was just a wheelchair condition. Either way, it was this moment that we started to worry.

Early 2016 Marcus was referred to a physio, then sent for blood tests.

July 15th 2016 (a week before Marcus’s 7th birthday) became the worst day of our lives. We met with a paediatric consultant, she confirmed that Marcus had Duchenne muscular dystrophy (DMD) Given my previous ignorance and thinking that being in a wheelchair won’t be too bad and there will be treatments for it we asked her what the outcome will be? her reply…… “Short term life expectancy.”

These were the last words I remember hearing at that appointment. Our world as we knew it came crashing down around us!

Two families a week in the UK are told that their child has Duchenne muscular dystrophy, a devastating muscle wasting disease that mainly affects boys. Those diagnosed with Duchenne are unable to produce dystrophin, a protein vital for the stability of muscle cells, without it muscle cells gradually waste and die. The ability to walk is usually lost by the early teens, by the early 20’s those affected are mostly paralysed.

And life expectancy is just 28 years old. There is no cure, Duchenne is currently 100% fatal.

Marcus from Moving Muscles for Marcus Family Fund

As his parents, we didn’t know how to handle the news. During this time we decided that in order to protect Marcus’s precious childhood for as long as possible, we only informed him of the basic facts of the condition. To mention Duchenne specifically, to share the prognosis was incomprehensible to us let alone to Marcus who was so determined and full of joy. I mean everything he had learnt to do and accomplish over the years will slowly be taken from him, how do you tell a 7 year old that?

Over the next 3 years Marcus learnt he has a form of muscular dystrophy and that his muscles will never get better. We had the “will I be disabled?” questions which when answered left him in tears, but testament to his strength and determination now it’s “when I am disabled”. Given all the various bits of equipment introduced to him (wheelchair, stairlift, bath lift, walking frame etc.) Marcus is taking everything in his stride and facing things so positively even if he is struggling to walk and finding things so very hard.

So now the time is right to tell him more and what better way than to start a new fundraising journey? This time with the amazing charity Duchenne UK!

If you can, please donate through this page as we want to raise as much money as possible for the trials, treatments and hopefully one day a cure for all affected by this cruel devastating disease.

To watch Marcus’s story please click on the video link below

You can keep up to date with our journey on Marcus’s Facebook page here:

If you can, please donate through this page as we want to raise as much money as possible for the trials, treatments and hopefully one day a cure for all affected by this cruel devastating disease. 

Thank you for taking the time to read our story

Marie, Andy and Marcus


Published on 31 July 2020

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Categories Family and Friends Funds