Heart transplant patient Joe Matthews has been left shocked to the core after doctors said his son needs the same life-saving operation at the age of just four.
Joe was declared clinically dead for five minutes during heart surgery when he was 19.
But he fought back to become a Transplant Games hero.
Now, in a cruel twist of fate, history is repeating itself and his young son Kit needs a transplant.
Kit was rushed to the Freeman Hospital in Newcastle two weeks ago after doctors discovered he was suffering from an enlarged heart – the condition that nearly killed his dad.
The youngster is being kept alive on a Berlin Heart machine while his doctors and family wait in hope that an organ will be found to save him.
Joe, 34, is believed to have developed the condition after contracting a virus. But the problem can also be hereditary and now Kit and brother Monty, two, face testing to see if genetics played a part.
The dad said: “I never imagined my child would end up in the same position. It’s devastating. We are just praying that a heart can be found quickly for him.
“There are risks for him being on this machine. He is at the top of the urgent list in the UK, so we are hoping that he will be saved like I was.
“Doctors suspect it may be genetic, but they can’t clarify that yet. I’m praying that he will be strong enough like I was, and a new heart will save his life.”
This week marks the first anniversary since Max and Keira’s Law was introduced, meaning all adults have to opt out of organ donation.
The regulations are named after 12-year-old Max Johnson, who campaigned with the Mirror to change the law, and his heart donor Keira Ball, who died aged just nine.
But the legislation does not apply to under-18s and parents still have to give permission for doctors to use their child’s organs.
Joe and wife Hannah, 32, of Retford, Notts, are now in the unenviable position of waiting for a child to die so that Kit can live.
Anxious Joe, a traffic management supervisor, said: “I know it’s a hard decision when something happens to your child. But, please, anyone, if you could see it in your heart to donate organs, then it’s going to save a child like ours. Losing a child is the most heartbreaking time for any family, but the decision to donate could save a life like Kit’s.”
Joe almost died after developing the heart condition – called dilated cariomyopathy – while studying in California. His heart was slowing to virtually nothing and doctors feared he was at risk of a fatal attack.
Worried family rushed from their home in Suffolk to be by his side. Surgeons fitted a defibrillator but it failed. During the operation to restart it, Joe’s heart stopped and he was declared clinically dead.
Amazingly, he pulled through, doctors brought him back to life, and he was given a heart transplant.
Surgeons warned him he would have to “take it easy” for the rest of his life, but adrenaline junkie Joe completed his first marathon a year after the transplant. He competed in the World Transplant games in Australia in 2009, supports the Transplant Sport charity and is the fastest man in Britain on a second heart, completing the 100 metres in an astonishing 11.06 seconds.
When his sons Kit and Monty were born, Joe never imagined that one of them would also need a heart transplant because doctors in America told him a virus had caused the issue.
He said: “Doctors never thought the virus I caught could be hereditary so it was a total shock to Hannah and I when Kit was diagnosed.
“Kit and Monty, as well as my side of the family, are getting tested to see if it runs in the family.”
Kit had been perfectly healthy until Easter this year, when he went off his food and lacked energy. Joe said: “We didn’t think anything of it at first.
“Four-year-olds can be fussy with their food, but he didn’t want to run around the garden, or eat his chocolate Easter eggs.
“So Hannah took him to the doctors. He was sent home the first time with antibiotics for a chest infection, but then a few days later he still hadn’t got any better.
“Hannah took him back and they thought he may have been bulimic, as he was being sick. So they sent him for some blood tests and X-rays, and the X-ray showed that his heart was enlarged.”
Joe was shaken to the core when Hannah, who teaches English, called from Doncaster Hospital to say Kit might also have dilated cardiomyopathy. He recalls: “I just said ‘Oh my God, it can’t be happening to him too.’ I thought it was a million-to-one chance when it happened to me all those years ago. I had never imagined it would happen to Kit too.”
Although Kit is on the Berlin Heart machine, finding a new organ is vital. Last night the family of transplant hero Max sent a message of hope to Kit and his family.
Max’s mum Emma said: “As a family who know what waiting for a heart feels like, we send love and best wishes to Kit and his family. We really hope that the special call will come for them soon.
“We also send love to all the families with the courage to make a selfless and brave decision to say yes to donation and save another life at the most difficult, personal time.
“Max, especially, is thinking about Kit and has sent a little card to him, showing his support and encouragement.”