Please save my life, Prime Minister
Brave Max calls for organ donor law change
SCHOOLBOY Max Johnson has made an impassioned plea to Theresa May over his desperate need for a new heart, urging the PM: “Please change the law to save me.”
The nine-year-old, who made the emotional appeal last night, has been waiting six months for a donor as he has an enlarged heart and relies on a tiny pump in his chest to keep him alive.
The Mirror is calling on the Government to change the law on organ donation so that people are automatically potential organ donors unless they opt out, to save thousands of extra lives.
And Max, who has been following our coverage since we highlighted his plight, said: “I have seen the Prime Minister is thinking about changing the law after I read it in your paper.
“I am actually really happy about that and I would say to her, ‘Please do that straight away.’ I would say, ‘Thank you so much, Prime Minister, because that would be a really nice thing to do – not just for me, but for other children.’
“I know that every day there is a person who died [on the waiting list]. So there would be more chance of those people getting a heart, which has to be a good thing.”
Max had a touching reunion yesterday with pal Connor Laws, 14, who he met as they waited for transplants. Connor received his new heart eight weeks ago. They met again at the Freeman Hospital Children’s Heart Unit in Newcastle.
Like Max, Connor also had cardiomyopathy, the condition which enlarges the heart and can be fatal if it goes undetected.
Max said: “Seeing Connor again makes me feel confident. He is running around and active with his new heart. It makes me feel better about what is to come for me.
“I’ve already had an operation where my chest was cut open and it is painful afterwards. It lasts for longer than a week and then you feel a bit fragile when you sit up, but the physio helps.
“I am really looking forward to my operation now. I had two or three days where I was really upset. I want to be home because Dad is doing me a nice new room.
“I am most excited about the stuff going in there – a heated chair, a music rack and a record player. I love playing my music. I have a collection of speakers and I love getting out to festivals and things in the summer, but I can’t go.”
When the transplant comes, Max also plans to celebrate his new heart’s birthday.
The youngster, who was in hospital when he turned nine on January 3, said: “My birthday is very close to Christmas so all the presents come straight away. I’ll have a birthday for my heart on the anniversary of the operation.”
Meanwhile Connor told of a life transformed by his transplant. He had spent eight days on a left ventricular assist device – the pump which Max uses. He said: “I remember having that LVAD like Max and I could hear it whirring in my chest at times. It was really loud. I got really ill on the LVAD. I was in a bad way. I looked terrible and I was struggling to talk at times.
“When the donor heart came I was just desperate to get it done, so I know exactly how Max feels. I was meant to be in bed for three days afterwards, but I got up in a day. I had a Zimmer frame like an old man, but I felt pretty good after three days and they put me on crutches. I am a rugby league loose forward for East Leeds and I can’t wait to get back playing.”
Both Max and Connor’s families are backing the Mirror’s Change the Law for Life campaign, which is attracting supporters at a rate of around 1,000 a day. Max’s story also inspired more than 1,000 people to sign up to the NHS Organ Donation Register, and another 7,200 have now signed our petition calling for a change to organ donation law. Max’s dad Paul, 44, of Winsford, Cheshire, said: “It is an inspiration for us to see Connor doing so well and it is a real testament to the care of all the staff here, but it also shows what an incredibly resilient young man he is.
“They have done a phenomenal job. I think it shows the Government why they need to change the law on organ donation.” In a British Medical
Association poll earlier this year, 66% of people in England, Scotland and Northern Ireland said they would be “willing” to donate organs after death, yet only 39% have signed the NHS register.
Wales changed to an organ donor opt-out system at the start of last year, with Scotland planning the same. Paul said donor figures in Wales are “improving all the time”.
He went on: “I went to an event recently and this man came up and said, ‘I hope Max gets his transplant as soon as possible’. He said, ‘I had my transplant 28 years ago.’
“Then a lady said, ‘Mine was 30 years ago’. They were both a picture of health, that’s what organ donation can do for you. It’s the gift of life.
“Max’s heart is supported on the left side by the LVAD, but the right is also weak. It is a race against time. We are so grateful to the Mirror for raising this issue.” Connor’s dad Jevan, of Castl- eford, West Yorks, added: “It’s a no-brainer to change the law. It will save the lives of so many.”
Jevan was given his son’s LVAD heart pump by surgeons and is getting it made into a unique memento for when his son is older. He said: “It is made of titanium on the outside but the pump inside which does all the work is made of gold.
“I will be having it made into wedding bands for Connor.” The teenager’s family, including mum Kelly, 40, are also backing the campaign for heart screening on the young. They are being supported by Connor’s rugby team.
The average LVAD is £80,000, and it costs around £69,000 for the operation to fit it. The pump can help some patients make a full recovery, according to a study this year. Experts say it is a lifeline amid a shortage of donors.
There are 6,335 desperately ill Brits on the waiting list. Jevan, 37, said: “There are so many things you have to consider before a transplant. As he is so tall, Connor fell into the adult category. It worked in his favour as sadly most donors are from road traffic accidents, and more often adults.”
Asif Hasan, a cardiothoracic surgeon at Freeman, said almost 20% of patients die waiting for an organ, adding: “We need to increase organ donation rates.”
Last week, Mrs May’s deputy spokeswoman said: “We are keeping a close eye on how the changes in Wales and Scotland are affecting donation rates in considering whether we would change our policy.”
When the donor heart came I was desperate, so I know exactly how Max feels CONNOR LAWS, WHO MET MAX AS THEY AWAITED TRANSPLANT
EVERY single politician in Britain should listen to little Max Johnson and change the organ donation law to save his life.
If England followed Wales and Scotland’s example, the nine-year-old would be far more likely to receive the heart transplant needed to keep him alive. We urge MPs to examine their consciences and give Max the gift of life.
The assumption that we are all prepared to give our organs when we die – unless we state otherwise – would boost the supply, as many of us never get round to signing the register.
There is even a safeguard allowing relatives to block transplants. We cannot call ourselves a civilised country when hundreds are callously condemned to early graves every year because they were denied a heart or kidney.
Inspiring Max speaks for many waiting for an operation. Any of us, through sickness or injury, could find ourselves in the same place.