'˜It's my way of saying thank you'

When Little Edward Grimley, or ‘Ted’ as he is known, was born in 2013 his parents Steve and Judi Grimley, from Heptonstall, received the devastating news he had a heart murmur and a heart defect.

Test after test dealt the couple another blow - their newborn son would be unlikely to live beyond his 5th birthday without open heart surgery.

A lifeline came when the couple learnt the heart unit at Leeds General Infirmary could carry out surgery to repair holes in Ted’s heart and widen a restricted valve, but it was vital surgery was carried out before his first birthday.

Steve, 47, and Judi, 38, spent the next 12 months in the care of the team in Leeds and were given emergency access to the ward in case Ted took a turn for the worse.

Steve said: “Fortunately Ted developed normally and was a real character full of fun, energy and love. We all found it hard to believe that Ted was suffering from a life-threatening condition and decided to get on with life. But when Ted reached 11 months, we began to notice his lips beocoming blue and that he often became breathless when playing.”

The couple were told it was time to prepare for the operation and after getting over the initial shock of the diagnosis a year earlier, were told that Ted was scheduled for the operation as soon as a slot became available.

“It seemed impossible that we were soon to hand over our precious son for such a complex and dangerous procedure,” Steve said.

“A parent’s natural instinct is to protect their children from harm and pain, but we had to keep reminding ourselves there was no alternative.

“We eventually took Ted down to the operating room. After reading his favourite stories, and one last cuddle, we held back the tears as we said goodbye to him. It was hard not to imagine that this might be the last time we would hold him,” he added.

What followed after that was an agonizing wait to see how the surgery had gone, but it couldn’t have been better news. Steve and Judi were told the operation had been a success.

Following his family’s ordeal, Steve wants to show his gratitude to the team who helped his family through those dark hours and is passionate about championing the important work it does and keeping the unit here in Yorkshire.

Steve says having the unit nearby was vital in helping them through the difficult times. Campaigners fought for years to keep the Leeds Children’s Hospital unit open after it was threatened by a controversial previous shake-up of services.

Now a fundraising campaign launched in May hopes to raise £500,000 to build a state-of-the-art operating theatre.

The ‘Keeping the Beat’ appeal to raise the money over the next two years will enable the service to meet national standards imposed as part of a new review of cardiac treatment for youngsters.

Steve will begin his challenge on Sunday and cycle 1,400 miles to Rome, where he will be met by Judi and Ted.

He said: “This is my way of saying thank you for the life of my son, to everyone at the children’s heart surgery unit in Leeds, on behalf of Judi, myself, our families, friends neighbours and work colleagues and everyone else who has benefited from the work of this amazing unit.”

To donate, visit: www.justgiving.com/Stephen-Grimley