EVERY night mum-of-three, Kate Lewis, can hear her heart pounding as she lays awake in bed.
But each palpitation only serves as a cruel reminder that she cannot give her four-year-old son the one thing that will keep him alive – a new heart.
Little James has an incurable heart condition and unless he has an urgent transplant, he will die.
His family cannot change James’ fate. But they are in a desperate bid to raise awareness that parents can sign up their children to the organ donor register to save lives.
Mum Kate, said: “It’s hard to sleep because my mind starts ticking. My heart hammers away through stress.
“Sometimes I go and check on James in bed and put my hand or my head on his chest to check his heart is still beating. It always feels very slow. I worry one day I will go in and it won’t beat.
“It feels like we are living on borrowed time and we really don’t know how long we will have with James.”
James has been on the waiting list for a new heart for 11 months.
Without one, doctors have warned his heart could fail at any time, and he’s unlikely to live past his sixth birthday.
The diagnosis last July came as a shock to Kate, 44, her husband David, 43, a shares trader and James’ two siblings Amelia, ten and Charles, eight.
James, centre, with his sister Amelia and brother Charles
Kate explains James was always a healthy child but last summer, he became fussy about his food and became increasingly tired.
Initially, Kate was urged to keep a food diary, but when his tummy started to stick out in May last year, she took him back to the GP who discovered his liver was swollen.
The youngster was referred to Southampton General Hospital where the family received the devastating diagnosis of restrictive cardiomyopathy (RCM).
The condition affects one in 5,000 adults, but just one in a million children and means the muscles in the walls of the heart are rigid and can’t fill up with blood normally.
Over time the organ stops pumping blood properly leading to heart failure.
Kate, says: “We were told our only hope was a heart transplant.
“We felt like the bottom dropped out of our world. It was unbelievable news.
“They say the average wait for a heart is 12 months, but I expect that could be longer. I’ve been told there are more children than ever waiting. It does feel like we have to make the most of our time we have with him and we’ve learnt to live with that but it’s taken a long time to accept it.”
Each time the phone rings at the family’s home near Romsey they dash to pick it up – not knowing whether it could be the call that could give their son the precious gift of life.
Tragically, he isn’t alone.
There are currently 256 patients in Britain waiting for a heart and one in eight of them are children. One in five patients dies waiting for a heart because there is no available donor.
All James can do is take his medication every day and wait, going between the Ocean ward at Southampton General Hospital and Great Ormond Street Hospital for tests and monitoring of his condition.
There are options for James to go on a ‘Berlin heart’, a blood pumping machine that can keep a child alive for up to a year, either at Great Ormond Street or Newcastle Hospital, but there is even a wait for that.
Kate says it is vital they keep positive.
She smiles momentarily as her mind wonders to the huge party she has planned following a successful organ donation, the letter she dreams of writing to his donor family and the Italian holiday she’d love to take James on once he is recovered where he could eat as much pizza and pasta as he wants.
But she knows even with a transplant, his future is uncertain and his life expectancy will be shorter.
James on the beach in Devon during the last holiday the family had together
“It’s been a real wake up call for us as a family. This has made me realise how lucky I am to have my husband and family and to live in the countryside, it’s making the most of everything and enjoying life’s simple pleasures.
“We don’t know how long James will live for but I just want to make his life really special.
“Even with a transplant, we won’t know how long he will live for but if he has a really special life, I’ll know I’ve done enough.”
Kate has given up her job as a history teacher to spend more time with her son and has dedicated hours into raising awareness of the chronic shortage of child donor organs –something she says has helped get through the toughest year of her life.
While 31 per cent of adults are signed up to the register, it is reported 57 per cent of parents would refuse to donate their child’s organs in the event of their death even though one child could save the life of seven others.
Kate, who has now signed up all the family as donors, explains: “When we first got the diagnosis, I was really upset. I said ‘how could I pray for someone else to lose a child?’ “I can’t bear the thought that someone else has to die in order for James to survive but I was told to separate the two things.
“In fact, I have read a lot of letters written by parents who have lost children. They say knowing their child can give the precious gift of life and give so much hope to another child gives them a lot of comfort. It means something positive can come out of a tragedy.
“If people signed up to the organ donor register it would be amazing. Children are dying needlessly all the time and there are enough organs to go around.
“James is really cheeky, fun loving and very affectionate. He enjoys writing his name already and loves playing Lego with his older brother. We have got a vegetable patch in the garden and he enjoys watching things grow.
“I want people to know we don’t expect James to be directly affected by this campaign.
“I’m just hoping it will make people think about donating, start talking about it, and then that will affect a wider group of children who need transplants.
“I have said I’m James’ mother and it’s not right I can’t do anything to protect him or do anything to help him, I found that very hard especially to begin with. But what I can do is be with him every step of the way and at least by raising awareness of the organ donor shortage, I feel I can do something positive in such a trying time.”
Kate is working with the charity Live Life Give Life to raise awareness and is also fundraising for the Love Hearts Appeal at GOSH.
To help end the organ donor shortage join the NHS Organ Donor Register.
Go to organdonation.nhs.uk or call 0300 123 23 23 Search facebook.com/jamesneedsaheart
For more information on the heart muscle disease cardiomyopathy, go to www.cardiomyopathy.org