“Mummy, when will Duchenne go away?”
A heart-breaking, impossible question that no parent should ever have to answer.
But it’s one that Alex Johnson was faced with just last week and will no doubt face again very soon.
Jack had just superbly executed his duties as guest editor for this Christmas edition of the Wigan Observer.
Alongside Alex and his little brother James, he was sitting in the back seat of my car on his way home. As we debriefed what work Jack had done and chatted generally, he picked up on the world ‘diagnosis’, turned to his mum and uttered those six words.
The conversation dropped as the full magnitude of what this courageous little boy was going through ploughed through the car like a truck.
I can’t tell him he’s going to get better, all I can do is tell him that Joining Jack is working as hard as possible to make some medicineAlex Johnson
“It kills me,” revealed Alex afterwards. “It’s not the first time we’ve had the conversation neither.
“I can’t tell him he’s going to get better, all I can do is tell him that Joining Jack is working as hard as possible to make some medicine.
“We have to put it very simply to him to try and make things better.”
Jack turns eight in the new year and has just gone through his most difficult 12 months to date. He now relies on his wheelchair a lot more as the illness begins to take its toll on his little legs.
Walking, not just running, is a big issue now and the physical impact takes its toll mentally on him and his remarkable family too.
“He’s seeing his friends now running around and it’s hard for him at playtime when they all play football,” added Alex.
“He wants to play and he wants to be like every other little boy and he can’t understand why he isn’t going to get better.
“He can be full of energy and be doing so well then he can just dip.
“He can get so tired that he can barely walk, his thumb goes in his mouth, he’s leaning on you and you have to pick him up.
“Jack really struggles with stairs and he’s in his wheelchair more now for trips out because he just can’t walk the distance.
“He’s trying to rationalise in his head now what is going on and why he’s not getting better and it’s heartbreaking.”
One way which Andy, Alex, their family and array of close friends try to deal with the difficulties they face is by fighting.
Alex now sits on a number of s teering committees, offering her views and telling the story of how her cheeky and loveable little boy needs access to drugs that could potentially save his life.
Joining Jack has continued to grow in 2015 and is now bigger than ever with a lot of that down to the awareness raised by England rugby union during the World Cup, thanks to father and son duo Andy and Owen Farrell.
The pair recently joined the charity and a number of other former rugby stars on a fund-raising trip to Dubai where they took part in a tournament.
As well as reaching the semi-final, it also proved to me their most successful trip to date,
Alex has also faced many long journeys to London to meet with politicians and drug regulators in her quest to get their son and so many others the treatment they need.
“It’s hard,” she admitted. “It puts great pressure on us as a family because I am travelling so much.
“I’m on a number of steering committees now. We have the European Medicines Agency (EMA) which approves drugs for the whole of Europe and I helped organise a big workshop with them and I’m now a trained patient advocate with them.
“It’s my belief, Andrew’s belief and our charity’s belief that if you are living with a terminal condition you have the right to try an experimental medicine that could potentially help you.
“I’ve also recently been asked to sit on a patient’s forum for the the Medicines and Health products Regulatory Agency which sits under the EMA and I’ve just had to speak at a meeting that looked at an accelerated access review and how we can help.
“To say I’m just a mum of a little boy from Wigan, it kind of does show the journey over the past four years and where we are getting the recognition as a charity.
“We are being asked to sit around a table with MPs and with regulators. People want to hear our perspective which, for us, is quite an honour.”
While Alex now works full-time in her role for the charity, she remains a wonderful mother to her two remarkable little boys.
Jack and James share a unique bond. What is different to most relationships held by brothers is that a lot of the protectiveness comes from the younger one.
James is utterly devoted to Jack and, while he doesn’t quite understand what is going on, he instinctively knows that he needs to be there for his big brother.
That much was evident this year when he took part in the Joining Jack Kiddle Climb, scaling the height of Mount Pen-Y-Ghent in Yorkshire.
“James is unbelievable,” beamed Alex.
“He’s so protective over Jack, he absolutely adores him.
“There was a dead sweet moment in Dubai when Jack went up on stage at the BBQ and he went with him and put his arm around him.
“People just don’t realise what the relationship is like. The two of them are incredibly close. He loved the Kiddie Climb, he would do anything for him.
“James does ask questions now. It’s hard for him because he doesn’t understand why he doesn’t have a wheelchair and Jack does. He’s actually asked for one to be like Jack.
“He just doesn’t understand the whole situation. When we carry Jack to bed at night, he looks up at me sometimes and wants to know why he, as the younger one, isn’t being picked up.
“There’s that element but he would do anything for Jack.”
Alex can’t hide her gratitude when asked what her message to Wiganers and all others who constantly put their hands in their pockets or put themselves through strenuous charity events to raise money to find a cure for Duchenne muscular dystrophy.
While the fight will go on in 2016, the hope continues to grow.