THE older brother of a boy waiting for a life-saving donor heart is raising money for The Sick Children’s Trust, a charity which is keeping the siblings together.

Harry Johnson, 12, from Winsford, who attends The Grange School, will be taking on a sponsored 5km run on Saturday to raise money for an organisation which has been supporting his family in free accommodation while brother Max waits for a heart 180 miles away from home.

Last year, Max, now nine, became seriously unwell with suspected asthma. After numerous visits to the GP and an X-ray he was rushed to Leighton Hospital.

It was discovered he had a very enlarged heart, a strong murmur and his resting heart rate was very high at 145 beats per minute.

The next day he collapsed and was taken to The Royal Manchester Children’s Hospital, where he was diagnosed with a serious heart condition called dilated cardiomyopathy.

Max spent a month in the hospital on a heart drug, but when his condition deteriorated further he was transferred 180 miles to Freeman Hospital in Newcastle, where he had open heart surgery to fit a mechanical heart pump and was put on the urgent heart transplant list.

Max has been in hospital for more than six months, and for five of those has been waiting for a life-saving donor heart.

During this time, his parents Emma, 47, and Paul, 44, alongside Harry, have been supported at Scott House - free ‘Home from Home’ accommodation run by The Sick Children’s Trust.

Emma said: “Max has been waiting for a heart for a long time. We know 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 and we’d be setting ourselves up for disappointment – which is not what we want to do. “As we wait for our son’s life-saving heart, one of us remains by his side nearly every hour of every day.

“This is because we’re being supported by a charity called The Sick Children’s Trust which runs free ‘Home from Home’ accommodation across the country, supporting families like ours and keeping us near to Max, while he is in hospital in Newcastle.

“Home is far away. It’s over 180 miles and can take nearly four hours to drive from Cheshire to Newcastle. There is no way we could do that journey every day and because of The Sick Children’s Trust we don’t have to.

“We’re currently staying at the charity’s Scott House, a few minutes’ walk from Max’s bedside, which is very reassuring. We have a room with three beds which is a huge help as it means our oldest son, Harry, can stay with us – which makes all the difference to Max.”

Harry, along with neighbour Neil Chapman, will be lacing up his trainers for a 5km run on Saturday in a bid to raise £2,000 for The Trust.

Neil, a very close friend of the family, is also doing a 3.8km open swim in Derwent Water on Sunday, July 9.

To help Harry reach his fundraising target of £2,000 visit justgiving.com/fundraising/maxjohnson030108