Hull mum vows to continue fighting for Muscular Dystrophy cure
A new drug has just been made available - but it won't benefit her young son who has the muscle-wasting disease.
A Hull mum whose little boy suffers with terminal Duchenne Muscular Dystrophy has vowed to never stop fighting to find a cure for the condition.
A new potentially life changing drug has now been made available on the NHS.
Translarna could delay the need for a wheelchair for up to 7 years.
But only around 50 children could benefit - meaning there's still no treatment available for young boys like Emma Wilkinson's 4-year-old son Joel.
Joel was diagnosed with the muscle-wasting disease just before his third birthday and could be wheelchair bound by the time he's just 8 years old.
Emma says while it's great that the NHS has decided to fund this new drug, more needs to be done to find treatment that will also benefit other children who suffer with it. She told Viking:
"I am hopeful that they will find a cure and a treatment, I'm just not that hopeful that it will be in time to save Joel. 13% of boys who suffer with the condition in England have the right type of mutation to benefit from this drug so while this is great news for them, we need to also not forget about all the other boys and push ahead to find a treatment so we can help them too.
"It's a progressive disease and Joel is deteriorating fast. Just in a year we have noticed a massive difference in him and his future is not looking great without a treatment and a cure but we just need to make sure we make as many memories as we can.
"If we go any length, Joel has to go in a push chair or it will be a wheelchair soon and he cannot get up the stairs anymore, he is wobbly on his feet and he has a lot more falls and he gets tired. It is heartbreaking because all you want for your children is for them to be happy and healthy and although we can make him happy, we can't make him healthy and it is just heartbreaking to watch.
"The only hope that we have got is that they find something that can slow down the disease or cure it. We've been doing all we can to raise awareness and funds and get all of these treatments out of the lab and onto clinical trials.
"It's taken 18 months campaigning to get this far to allow this new drug to be funded by the NHS which gives the rest of the community great hope that if something does become available, that will also be available aswell."
About 100 boys are born with the muscle-wasting condition in the UK each year.
Anyone wanting to support the Joy for Joel fundraising cause can visit: