Parents' plea after son's life saved by transplant

A family who have spent years living in fear their son could die say his heart transplant is a "cherished" gift.

Almost half of three-year-old Charlie's life has been spent in hospital attached to a life support machine after he was diagnosed with a genetic condition that prevented his heart pumping blood around his body properly.

His parents Mark and Linda were warned there was only a low chance of him receiving a life-saving transplant, because for that to happen another child with a healthy heart around a similar age had to die.

Linda said: "You live with this constant mixture of having this incredible happiness, but someone else had to go through incredible sadness."

Since the operation, Charlie's parents said even doing small things such as all going to bed in the same house is incredible.

"We can now be optimistic about the future, about him getting to grow up," said Mark.

Linda urged other parents to have a conversation about donation before a tragedy happens.

"The decision to donate, you are not just saving Charlie's life, you might be saving four or five other lives," Mark added.

Charlie's parents first became concerned after his breathing grew noisy and he would not stop crying when he was one month old.

"By the time we got him to hospital, he basically collapsed," Mark said.

Charlie spent the next five months in the Intensive Care Unit at Bristol Children's Hospital, where he was diagnosed with a dilated cardiomyopathy.

Linda added: "You live in that worst case scenario [thinking] his heart is not going to keep going."

He was eventually allowed to return home, but months later he deteriorated again and was put on a ventilator before being transferred to Great Ormond Street Hospital in London.

There, doctors told Mark and Linda that Charlie's only hope of survival was to stay on a specialist machine designed to support children with end-stage heart failure called a Berlin Heart. This machine acts as his heart and had to be worn around the clock.

"We trusted them [medical staff] absolutely - the surgeons and the doctors are all amazing and they had saved his life already a couple of times so we knew he was in the right hands," said Mark.

After 10 gruelling months spent living on a ward, when his parents constantly feared the worst, a donor was found.

"The counterpoint is that somewhere else a family was having the worst time and gave Charlie a chance to live," said Mark.

"It's not just a mechanical issue - someone's family has to go through the worst time for you to have good times."

Linda added that her family will be eternally grateful.

"We just hope that the two things can balance each other out together and the two families who gave the most incredible gift by donating an organ - especially from a child who passed away - can see that it lives on in this incredible gift that is so cherished.

"It's hard to explain how many lives one organ effects," she said.

Since the complex operation, Charlie has been "thriving", his parents said. He has recently enjoyed his first trip to a beach at Sand Bay and then went for fish and chips.

"It sounds incredibly normal, but compared to being in a high-dependency unit for 10 months when you worry all the time, it's just lovely," said Mark.

According to the NHS Blood and Transplant about 7,500 people are waiting for an organ transplant in the UK, including 250 children.

A spokesperson previously said to the BBC: "We urge parents to think and talk about organ donation for themselves and their family today.

"Your decision could help save lives."