Jack Johnson looks just like any other four-year-old boy, but he and his family face a long battle.
Jack has a condition called Duchenne Muscular Dystrophy, which means that, by his teenage years, he could lose all bodily functions and be paralysed, or worse. His dad, former rugby league player Andy Johnson, and his wife Alex, 27, have launched a campaign ‘Joining Jack’ to try to raise funds for research into the condition and to help find a cure.
Andy, speaking from the family home off Preston Road, in Charnock Richard, said: “Every night I cry myself to sleep knowing what could happen to Jack. Our lives have changed forever since we found out it was the worst news that any parent could ever imagine, and taken us six or seven months to find our feet, and now the charity is giving us strength.
“Jack is great at the minute, and that is what makes it so difficult when you understand what could be around the corner.
“He is really cheeky, and the other day he threw a toy and shouted ‘Fetch dad, fetch’, which brings a smile to your face.”
Andy admits it is ‘heart-breaking’ what lies ahead.
The 38-year-old said: “I cannot accept it as a father that this is the way it is going to be.
“I am going to fight it all the way. There is some data released from America showing there is progress being made into this. They are trying to stabilise the condition and could in future be able to help these boys.
“The work they are doing is on one area but we have been told that it can be adapted and we hope it will happen.”
Even though the cure may be a while off, in the meantime, Jack will have to take steroids and provided the body does not reject them it will keep him healthy for a couple of years.
The family has had a nervous time as they found out about Jack’s news and feared the worst when they found out the sex of their soon to be born son James.
Fortunately he did not have the genetic condition and now the brothers enjoy a happy life together.
So far, thousands of pounds have been pledged towards fund-raising for the appeal and Andy admits that every penny counts in trying to raise money for research.
He said: “This is going to cost millions to find out a cure but then we hope that we can convince the government that it has to be available on the NHS here.
“We are getting behind the campaign and the work that people are putting in is coming as a bit of a comfort to us.
“We have always wanted a quiet family life and have never felt comfortable asking for anything but now is not the time to be proud.
“From the bottom of our hearts we are asking if you can help join our fight to eradicate Duchenne Muscular Dystrophy.
“You can contribute by making a donation, organising an event or simply adding us onto your facebook or twitter page.
“Time is precious to us now and for ANY support you can give we will be eternally grateful.”