Family pain at Jack's isolation

Jack Johnson, who suffers with Duchenne Muscular Dystrophy, is unable to leave his home for the next 12 weeks and his loving family are worried about even touching him, so high is his risk of infection.

His mum Alex says that it is an “incredibly stressful time” for the Johnsons and has thanked people for their support and patience.

A fortnight before recent draconian crackdowns on public movement were announced by PM Boris Johnson, Alex and ex-Wigan Warrior husband Andy had made the difficult decision to remove their 12-year-old son from school, and had begun social distancing because of all the uncertainty.

Alex said: “We have now had to take social distancing to the next level with complete isolation. As a whole family we have made the decision to self-isolate to be able to protect and support him through the next 12 weeks.

“Jack is now not allowed to leave the house and we have to avoid touching him as much as possible. This is so very difficult for us because Jack needs help with most things - like getting dressed and getting up from the floor - and not being able to cuddle and kiss him at a time when all our anxieties are through the roof is unimaginably difficult.

“And trying to carry on working full time and home school two children with very different needs last week, left me feeling like I had done 10 rounds with Mike Tyson. I was a wreck.

“I am also currently trying to support lots of Duchenne families through this crisis and I am worried about the impact it is having on everyone’s mental health. We have been providing emotional support and advocacy support to families who need it and we are now planning a host of activities alongside with Duchenne UK to support the Duchenne community in the coming weeks.”

Alex said that Jack’s Uncle Matt, Race Director and Melanie and Michelle from Joining Jack have been working incredibly hard to reschedule the Run Wigan Festival to the first weekend in September.

She said: “Everyone puts their heart and soul into organising JJ’s event so it hit us hard as a team having to cancel. Even though the decision was eventually taken out of our hands, we still felt like we were letting everyone down.

“We know how hard people have been training and how much everyone was looking forward to event. The run supports lots of charities in raising funds and we know how hard it is going to hit them. Cancelling the run will cost Joining Jack financially but we are determined to make the rescheduled event in September our most successful ever to support Joining Jack and our local community.

“As a charity we are working with specialist doctors and healthcare professionals and universities to look at how our funding will impact clinical trials and the research we fund. We will endeavour to support them in any way we can.”

But Alex added that Jack, “ever the man to have by your side in a crisis”, is going to be sharing videos from his time in isolation. She asked that readers follow his journey across the usual Joining Jack social media channels and on JJ’s YouTube channel and offer any words of encouragement.

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