Jack Brotton has one birthday wish: to slow down time.
Jack, who is 13 on Friday, wants to stretch out the hours to spend as long as he can with his own heart.
A rare heart defect means Jack lives in hospital, where he has had palliative care for three months while on the urgent transplant list. A heart donor is his only hope.
His case shows the importance of the Mirror’s campaign to introduce Max and Keira’s Law, which will replace England’s “opt-in” organ donor system with an “opt-out” regime.
Due to come into force in spring 2020, it is set to save hundreds of lives every year.
Mum Sarah Robson says: “Jack knows he desperately needs a transplant but is also scared of the operation.
“He doesn’t want anyone to lose their life for him. The thought really hurts him. But he knows a donor is his only chance.
“A new heart would be the best present he could ever receive — literally the gift of life.”
The change in law has been championed by the Mirror and named after 11-year old Max Johnsn and Keira Ball, 9 .
Max had a heart transplant after Keira’s family donated her organs after a car accident in July 2017.
Sarah says: “I will never be one of those pushy people who say, ‘You can’t take your organs with you’. It’s a deeply personal decision and I respect that.
“But being in hospitals so long, I’ve seen the other side: babies, toddlers and lovely young kids in pain, their parents crying when they’re struggling to survive.
“But those lives can be saved. My message is just please, as a family, have the conversation about becoming organ donors.”
Sarah, 36, is supported by the charity Little Hearts Matter and has come to know other “heart mums” who have children with similar conditions.
“Jack idolises Max Johnson for raising awareness and he’s inspired by the way he’s influenced the law change.
“Max gives him hope by showing what a difference a transplant can make. Jack says, ‘I hope I can be as happy as Max’.
“Max’s mum Emma has been a great support because so few know what I’m going through. It’s a life dominated by constant worry, stress and hospital stays but we heart mums can cry together.”
Jack’s heart problems were diagnosed during Sarah’s 20-week pregnancy scan.
He was born with a single heart ventricle, meaning his heart only had one pumping chamber. He had six cardiac arrests when he was just a few months old.
Jack, from Darlington, also had transposition of the great arteries which means the main heart valves are connected to the wrong places.
If that was not enough, there was also a narrowing of the aorta and a hole between the two lower chambers of his heart.
Jack is now suffering from a secondary lung condition called plastic bronchitis — extremely rare and potentially fatal. It means a transplant is needed as soon as possible.
Last week Sarah, who also has a six-year-old daughter Eva, was told a heart had been found for her son.
Some 12 hours later, they were told the retrieval team had examined the heart and found it wasn’t suitable.
Sarah says: “It was such an emotional day. We thought, ‘this is it — Jack’s going to get a new heart and we can look to the future.
“I spent the entire time crying for a family I didn’t know because I knew somewhere there was a mum grieving for a little girl or boy she had lost.
“In the small hours of the morning, hearing the transplant couldn’t happen was devastating.”
Long spells in hospital have disrupted Jack’s school work, and being exhausted much of the time means it is hard to concentrate.
“Jack’s football mad but the most he could ever manage is to play one half of a game,” says Sarah.
“He can barely walk up stairs without being very out of breath.
“But he’s determined to play football for the North East’s Transplant Games because he was picked as poster boy for the campaign.
“He’s a real fighter — I knew that when he was a tiny baby.
“When he was just four days old he had the first of five major surgeries to try to mend some of the problems.
“When he was a few months old, he had six cardiac arrests so it was really touch and go.
“After one cardiac arrest, he flatlined in intensive care. I thought I was going to lose him. My brave boy managed to hang on.”
Sarah is immensely grateful to the medics, medication and frequent hospital stays which have kept Jack going.
But despite all the support, he has always been fragile and prone to setbacks.
In spring last year he became very pale, thin and weak.
In October he was added to the transplant list, and in January after admission to A&E at Newcastle’s Royal Victoria Infirmary he moved up the list as an urgent case.
He has been at Newcastle’s Freeman Hospital ever since. Eva even transferred to a school nearby.
“It’s really hard for Jack to be stuck in hospital, knowing all his friends are at school or playing sport. He’ll become a teenager when he’s in hospital,” says Sarah.
“He adores Eva but recently has perhaps felt a little jealous because each night, she and I have to leave him to sleep alone while we go back to the hospital accommodation nearby.
“He keeps saying to Eva, ‘It’s OK for you – you can go to school and you have mum’.
“But we don’t have a family home any more – we live in the hospital accommodation. Family life has changed drastically. It really impacts on everyone around us.”
For now, Jack does not look too far ahead.
Sarah says: “Jack takes each day as it comes, is very appreciative and does everything he can to live life to the fullest.
“We call him Jackie boy and he’s a dream son — affectionate, funny, cheeky, brave and selfless.
“I cannot bear to think of life without him. So I urge all parents to have the conversation about organ donation.
“Sadly my son’s future is in someone else’s hands.”
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