Wigan mum who set up charities following son's incurable Duchenne diagnosis receives OBE
A mother from Wigan, who has spent more than a decade trying to find a cure for her son, and thousands like him, has been honoured at Windsor Castle.
Alex Johnson founded the charity 'Joining Jack' 12 years ago after her son, Jack, was diagnosed with the muscle-wasting disease Duchenne Muscular Dystrophy.
After raising more than £2 million for the charity, she received an Order of the British Empire (OBE) from the Princess Royal on Wednesday January 24.
Jack was 3-years-old when he was diagnosed with Duchenne Muscular Dystrophy.
It is a disease which affects 1 in every 3,500 boys worldwide.
There is still no cure, but thanks to Alex and husband, former Wigan Warrior, Andy Johnson, it's getting closer.
With support from the world of sport and showbusiness - and a well-known link-fingered salute - the Joining Jack charity has raised more than £2 million for research.
It's paid for doctors, nurses and new drugs, drugs which are slowing down the progression of the disease.
Alex told ITV News, "I feel really privileged because it was given to me but it's for my family, for Jack, for James, for Andy, for all of my friends, for everybody who supported us since Jack was diagnosed, it really is for them.
"It represents how far we've come in the past 10 years, from us getting Jack's diagnosis and being told to go away basically and give him the best life we can, to us last month managing to get the first treatment for Duchenne approved by the regulator in the UK.
"So I think it shows the work that has happened and how the landscape for the Duchenne community has changed."
Alex's husband Andy was also there to watch her receive her honour, "It was quite emotional to be honest but it was lovely to watch Alex receive the award."
Alex's son Jack said "Today has been amazing and I'm really proud of my mum and what she's done. She deserves this, she really does."
DMD is a muscle-wasting condition that causes progressive muscle weakness.
Since his diagnosis, Jack has lost strength in his legs and his father says he is moving into a wheelchair more full time.
Eventually, Jack may need spinal rods to keep him upright and ventilation to help him breathe.
Jack's story has inspired the nation, with celebrities donning the "linked-fingers salute".
Alex says their fight for a cure for the disease continues.
"We're very lucky that Jack got onto a clinical trial and he's testing a drug, and we're now going to push for every single person living with Duchenne to get access to treatments."
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