I’ve served my country, fought in three warzones and all I want is help from my country so my son can get better.
Those are the sobering words of Hockley Heath resident Marc Clark whose two-year-old son, Jack, was diagnosed with Duchenne Muscular Dystrophy (DMD) – a disorder which affects one in 3,500 people nationwide.
The cruel disease currently has no cure and, on current statistics, Jack may require walking aids in less than a year, then need a wheelchair when aged eight before his heart fails around his 18th birthday.
The disease, which only affects boys, is diagnosed to one in every 3,500 and has an average life expectancy of 18 years – Jack was diagnosed just before Christmas last year.
Devastated father Marc, who served for his country in Iraq and Afghanistan for several years during three military stints as head of communications, told The Observer in an emotional interview that the first signs of the disease are beginning to show.
Marc said: “We can already see signs of the disease setting in, Jack will fall over on a regular basis and it’s heartbreaking because he thinks it’s funny – he’s such a cheerful kid.
“His condition is getting worse on a daily basis and we can expect Jack to be in wheelchair in eight or so years.
“It’s like I’m grieving everyday, some days will be full of joy and others I’ll be crying continuously all day.”
Part of the 38-year-old’s plans is to raise as much awareness about DMD as possible – as well as raising vital funds for those researching with the aim of finding a cure.
Marc added: “Before Jack was diagnosed I’d never heard of DMD before and the same applies to my family and friends.
“I’m hoping that with the support of those close to me and the Solihull public we can at least raise the profile of DMD and spread awareness so people are familiar with the disease which is so very cruel.”
An online petition, which has been live for less than two months, has already gained the signature of over 7,000 people.
Marc is aiming to use the power of social media to increase his chances of spreading the word about DMD nationwide and is hoping the government will start funding research for a cure.
Now an IT contractor, Marc described looking after the petition as “like a full time job” and is urging local MPs to boost research into the disease so a cure can be discovered.
He added: “We have to keep pushing this petition, it’s almost like a full time job in responding to people’s messages so we’ve brought in a man to produce a video with the aim of summarising the disease and our position.
“My wife, Anna, is unbelievable, we’re supporting each other through this tough time and it’s a rollercoaster of emotions.
“I feel like I’ve got to do something, when I was told the news it was almost like I was being told ‘hard luck, watch your son die’ and I’m not going to accept that.
“I’m running a half marathon to raise money and we’re putting pressure on the NHS so Jack can be seen to as often as possible.
“Jack will be starting physio next week to help with anything that can aid him.
“Activities such as swimming or riding a bike can be really good though we have to be careful and keep his feet straight – simple things like that can prove really difficult at times.
“Our lives have been devastated beyond belief and we thank both family and friends for the support we have already received – we really are blessed to have the people we do around us.”
To sign Marc’s petition, visit https://www.change.org/p/marc-clark-government-to-fund-research-for-duchenne-muscular-dystrophy-cure?recruiter=472376142&utm_source=share_petition&utm_medium=copylink or visit https://www.gofundme.com/jacksmission?utm_source=internal&utm_medium=email&utm_content=CTA_view_campaign&utm_campaign=donation_receiptv5 to donate to their cause.
