A TINY gesture by one of England’s top rugby union players has thrown the plight of a Chorley youngster back into the spotlight.
When fly-half Owen Farrell scored a try against Italy in the Six Nations at the weekend, he linked his forefingers together in a show of public support for six-year-old Jack Johnson, who has a terminal muscle wasting disease.
The locked-fingers sign represents the initials of the Joining Jack charity, which was set up by Jack’s parents in a bid to fund research into Duchenne muscular dystrophy, with the hope of finding a cure.
Farrell’s gesture, and the resulting publicity, came as the Department of Health announced a new scheme to fast-track breakthrough drugs to seriously ill patients, which has given the family a further boost.
Jack’s dad Andy Johnson, 39, is a former professional rugby league player with Wigan, where he played alongside Andy Farrell, who is Owen Farrell’s father. Dozens of rugby league players have made the Joining Jack gesture since Jack was diagnosed in 2011, as well as Tour de France winner Bradley Wiggins.
Mum Alex, 29, said: “What Owen Farrell did during the Six Nations was fantastic and Jack was thrilled.
“The England rugby league player Sam Tomkins also did it playing out in New Zealand, so it’s been an amazing weekend.”
Referring to the DoH announcement, Alex said: “There is a drug which is in a first phase trial, but it should move into the second phase later this year.
“We were worried that if we find a viable treatment the regulations could remain too tight for it to be used, so this will help speed up the whole process.”
Duchenne muscular dystrophy is a genetic disease that affects roughly one in every 3,500 boys and there are about 1,500 sufferers in the UK.
The disease means Jack is likely to be confined to a wheelchair by the age of 12. It will also spread to his arms and neck, eventually causing complete paralysis, requiring him to be kept alive by a ventilator. Sufferers usually die before their 30th birthday.
Alex added: “The hope is we can stop the progression of the disease or at least slow it down. It’s so hard for Jack because he sees his peers doing so well and gaining in ability, and he’s slowing down.
“But we try to be as positive as we can be and focus on the things he loves doing, like drawing and building Lego, and all this support gives him such a boost.”