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Winsford boy is face of national campaign to change organ donor law as time runs out for lifesaving heart transplant

Max Johnson desperately needs the organ donor law to change

Max Johnson needs a new heart

Time is running out for a nine-year-old Winsford boy who desperately needs a heart transplant.

Max Johnson, who is currently being kept alive by a mechanical pump fitted inside his tiny chest, is the face of a campaign by the Daily Mirror which is calling on the Government to change organ donation laws – and save thousands of lives.

The youngster’s heart has been so weakened by heart disease that Max relies on the pump to move bloood around his body – but it is not a permanent solution, and his family is desperately trying to find a donor who can give him the chance of life.

They are backing The Mirror’s Change the Law for Life campaign which calls for an opt-out donor system to replace the current opt-in one.

Max with mum Emma.

Currently in the UK, 10,000 people need an organ transplant – 182 of whom are children – and 1,000 die every year while they wait for treatment.

As the law stands, adults who want to donate their organs after death have to opt in through the donor card system, but the Mirror’s petition calls for a change in the law which would mean consent was presumed unless someone opts out.

Hope

It is already the case in Wales, and Scotland is planning to do the same – giving patients like Max hope to survive.

Max’s mum Emma, 47, said: “Around 90% of people say they would have no objection to donating an organ. But just 30% join the organ donation scheme. That’s a massive 60% gap, and many don’t tell family members about their wishes.

“We feel an ‘opt-out’ organ donation system would work better, as it does in other countries.”

Emma spoke about how Max, a pupil at Oswald’s Worleston CE Primary School in Nantwich, had always been a lively boy, full of energy and 'fit as a fiddle' until last autumn when he became pale, started to lose weight and began swallowing big gulps of air as he struggled to breathe.

Max has made national headlines

He was diagnosed with asthma to begin with, but became violently ill and was rushed to hospital where a chest-X-ray found his heart was very enlarged.

Doctors said he had a heart murmur that could be heard from front and back and a resting pulse of 145 beats per minute, and Max was diagnosed with dilated cardiomyopathy, which causes an enlarged heart.

He spent a month in the Royal Manchester Children’s Hospital on the heart drug Milrinone, but shortly afterwards was sent to a specialist heart unit at Newcastle’s Freeman Hospital and placed on the urgent donor list.

It was then Max had to undergo heart surgery to fit the mechanical left ventricular assist device, known as a ‘bridge to transplant’.

“Once fitted, we noticed Max’s lips were pink again, instead of pale and white like they had been,” said Emma. “He’s been in hospital for six months, five of those he’s been waiting for a heart which just hasn’t come yet.

“When it does, it’ll happen suddenly. But we can’t spend every day in hope, thinking it could come today, tomorrow or next week. It’s too painful. We’d be setting ourselves up for disappointment.”

“Max has turned nine now and we’ve seen the seasons change from autumn, to winter, to spring, to summer. He’s just had a terrible bug which made him sick, and the little pump for his heart is keeping the blood moving around his body.

'Gift of life'

“We tell Max he’s waiting for the gift of life. That’s how he sees it now. Max understands that for him to receive a heart, someone has to pass away – a very difficult concept to come to terms with as an adult, let alone a child.

Emma and husband Paul are spending their time at the Freeman Hospital where they stay in a flat provided by the Sick Children’s Trust and at home with their other son Harry, 11.

They paid tribute to the work of the Sick Children’s Trust which has enabled them to be with their son when he needs them most.

As his way of giving something back, Harry is doing a 5km park run to raise funds for the Sick Children’s Trust, while Max’s headteacher Alex Goodwin raised £830 from a run.

Comedian David Walliams added to their fundraising efforts by donating two of his children’s books – one for Max, and one to be raffled.

You can sign the Mirror’s petition here.

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