The little boy who inspired Owen Farrell’s touching linked-finger salute has described the England rugby union captain as his hero for supporting his battle with a life-limiting condition.
Jack Johnson, who has Duchenne muscular dystrophy – DMD – will be glued to the TV on Saturday when Owen leads out his men for the World Cup final.
And he’ll be ready to yell: “Daddy, Daddy, he’s done it!” every time his favourite player links his fingers in a JJ shape to celebrate a successful kick.
The gesture represents the initials of Joining Jack, the charity founded by the 11-year-old’s parents to fund research into his condition.
And Jack is positive he will see it repeatedly as Owen piles on the points in the showdown with South Africa.
“I think he will do it three times on Saturday. He’s going to win it because of his courage,” Jack said. “He’s my hero.
“He’s nice, caring and he helps me and boys like me. He’s amazing.”
Owen found out about Jack’s degenerative disease through his dad, rugby league great Andy, who played for Wigan Warriors with Jack’s father, also Andy.
The muscle-wasting disorder will leave the sports-mad lad unable to walk when he reaches his teens. But the youngster gets a huge lift every time he sees Owen’s show of support.
“When I saw him do the salute, I thought, ‘He’s doing that for me and he’s here to help me and other kids with Duchenne’,” Jack told the Mirror.
Jack, who lives in Wigan, is one of 2,500 boys in the UK with DMD. Only a small number of girls are affected.
His mum, Alex, told how it was like a “nuclear explosion” when the “little boy, we absolutely love and adore,” was diagnosed with the condition in 2011.
But she says stars like Owen, and Yorkshire and England cricketer Jonny Bairstow who has shown his support for the cause, have helped her and husband Andy to cope.
“To be told your son has a life-limiting condition was absolutely petrifying,” she said.
“It was like a nuclear explosion had gone off in our lives. The first year was horrific but we got through it thanks to people like Owen.
“Andrew used to play with Owen’s dad in the Wigan Warriors and they told him about Jack.
“I think it’s amazing what Owen has done – we are in complete awe.
“He’s on this world stage with millions and millions of people watching around the world and he remembers Jack and remembers the boys we are trying to help. For us that’s incredible.”
A mutation in Jack’s X-chromosome means he does not make the dystrophin protein, causing his muscles to break down. The family’s charity is funding clinical trials in the US which are already showing some promise.
Children taking part have shown a 40-60% increase in their production of dystrophin. Now Alex and Andy want the same tests to be carried out in the UK and it can’t happen soon enough.
“It’s heartbreaking when your son says, ‘They need to come quicker mummy, I need a treatment now’,” Alex said.
“He knows he’s declining and using the wheelchair more.
“It’s so devastating to know there is something that could help but we just can’t get our hands on it yet.”
The mum dreads the prospect of seeing her son unable to walk by the time he reaches adolescence after the loss of every single muscle.
“There are no words to describe the utter devastation felt upon hearing that your child’s life will be cut short because there is no cure,” she said.
“Seeing him struggle as his body wastes away and being absolutely powerless to help – this is why it is so important to raise awareness.
“So what Owen is doing for us is incredible and makes Jack’s face light up every time. He loves him, he’s his best friend. His disability affects his movement but he’s on the floor and right in front of the TV when Owen’s on, so we can’t see because he’s so close.
“He’s met Owen quite a few times and has known him since he was a baby.
“He has been an England mascot and walked on holding Owen’s hand.
“He was the most excited for [last Saturday’s] game against New Zealand. I’m sure he will be up at 5am on Saturday.”
Alex and Andy have another son, seven-year-old James, who also worships the England captain. “He’s my crazy child and he adores his big brother. He hugs him all the time,” Alex said. “He helps him as much as he can, he’s become his legs. James adores Owen as well, he just stares at Owen. They think he’s a superhero.
“When Owen makes the salute it makes them both so ecstatic. We would love to see Owen lift that World Cup on Saturday and see him do the salute. This simple gesture has changed Jack’s life. Without us funding the research the advances that have been made would not have happened.”
Owen’s support has also affected the lives of other youngsters with the condition.
Mum-of-three Emily Crossley from London, whose son Eli, also aged 12, has DMD, said: “What Owen has done is open doors for us.
“Eli loves football and when he was watching the [semi-final] on Saturday he said, ‘I prefer rugby now’. His dad nearly fell off his chair.
“Life is really hard for them every day.
“They are surrounded by their healthy friends so seeing someone who everybody hero-worships make this gesture is life-affirming for them.
“It is one real beacon of hope. To know that someone so incredibly inspiring would take a moment to remember Jack is phenomenal.
“It gives all the other boys with Duchene pride and hope as well.”
