DON’T LET ANY MORE DIE
Today we reveal that 4,712 people have died in England in the past decade while waiting for an organ donor. People like tragic Aoife, the smiling four-year-old girl in this picture. The death toll is shocking and the Mirror is campaigning to persuade MPs to change the law and save hundreds of lives. Now we need your help to make sure our politicians listen...
SHOCK figures reveal 4,712 patients died waiting for donor organs in 10 years.
But you can urge your MP to back an opt-out law that would have saved many lives.
When little Aoife O’Sullivan’s heart began to fail, her anxious parents clung to their only hope. They prayed a donor would be found to save her before it was too late.
Tragically, it was not to be. Aoife’s heart stopped beating as she languished on the transplant waiting list, and emergency surgery to fit a temporary mechanical replacement could not save her.
As four-year-old Aoife slipped away, mum Michelle and dad Neil held her tiny hands and they knew what to do.
They told doctors they wanted to donate their daughter’s organs. Her kidneys saved a young man’s life – just as they had hoped some selfless stranger would save hers.
Michelle says: “We didn’t have to talk about it. There was no decision to make, we knew that was the right thing to do.
“Life is so precious. Organ donation is not about saving one person, it saves a whole community of people who were suffering with them – their family, friends, and work colleagues.”
Aoife was a bright and bubbly girl who had just started school in Leighon-Sea, Essex when a recurring cough previously dismissed as colds or asthma got worse.
When she began coughing up blood she was raced to Southend Hospital and diagnosed with tuberculosis and pneumonia.
Michelle, 44, says: “It was very scary, but I thought at least we know what it is now and she’s in hospital, that’s the best place for her.” But worse news followed. An X-ray showed Aoife’s heart was unusually large for her age.
At the Royal Brompton Hospital in West London she was diagnosed with a rare heart disease called restrictive cardiomyopathy and moved straight to intensive care.
Her heart muscles had become too thick and rigid, stopping the chambers filling with blood. Legal secretary Michelle says: “Suddenly her life was in danger.” Broadcast engineer Neil, 44, raced to the hospital and they were warned what to expect.
“There was no cure. It was devastating,” says Michelle. Aoife’s only hope was a heart transplant, but the shortage of donor organs meant an agonising wait.
Michelle says: “My first thought was, I don’t want her to have someone else’s heart. I just wanted her to get better with her own heart. But that wasn’t an option.
“To make matters worse, we needed a heart that had to be a match for Aoife’s body. The odds against us felt overwhelming.”
Aoife spent Christmas at Great Ormond Street Hospital. By January doctors decided Aoife could go home to wait, and her parents tried not to dwell on the transplant. Michelle says: “I couldn’t keep thinking about it. I knew it would mean another family had lost their son or daughter.”
The parents, who also have daughter Emilie, now two, were told Aoife would eventually need a mechanical Berlin Heart to pump her blood when her heart failed, to keep her alive until a suitable organ was found.
As her condition deteriorated medics raced to fit one. As the morphine wore off doctors realised she had suffered permanent brain damage. Michelle says: “Our little girl was gone.”
When Aoife’s life support was switched off and she died in March 2016, her parents knew they wanted to donate her organs.
Because Aoife was on so much medication in hospital, only her kidneys could be used. They saved a young man, giving him and his family the second chance they never had.
Now Michelle and Neil are backing the Mirror’s campaign for an opt-out donor register. Michelle said: “So many don’t know what their loved ones’ wishes are regarding organ donation. If we had an opt-out system, it would make people think about it.
“I think the majority of us would want to save another’s life if our time had come.”