A TRIO of Barnsley men who completed the Three Peaks Challenge in memory of a one-week-old who died of an extremely rare disease have been nominated for a Proud of Barnsley award.
Luke Stephenson, 30, and his friends Dale Whitaker and Matthew Strutt took on the mammoth challenge earlier this summer in the latest part of their fundraising series.
In 2018, Dale and his partner Jess brought their first child – Rowan – into the world and at first nothing seemed amiss.
However, the pair quickly realised that something was wrong.
At just five days old, Dale and Jess were told that Rowan had been diagnosed with an extremely rare disease – Noketotic Hyperglycinemia – which affects just one in 73,000 people.
Dale said: “Our world turned from joy to sheer panic, Rowan continued to sleep through all this, he never cried once.
“All blood results, scans and tests came back clear which baffled the medical professionals.
“But at just three days old Rowan then needed help to breathe via ventilation.
“He was deteriorating by the day and professionals advised there was no effective treatment and the sooner he was taken off life support the kinder this would be,
“It’s impossible to describe the shock and grief we experienced in this moment, not to mention the months that have followed.
“Rowan’s life support was withdrawn that evening after he was visited by close family and friends where we were able to have Rowan christened and to say good bye.”
The trio – alongside Dale’s family and friends – have since been fundraising for Joseph’s Goal, a charity which supports those affected by NKH.
Since his death, they have raised more than £29,000 for the charity – and the trio’s Three Peaks Challenge added £3,000 to that figure.
Upon hearing of their nomination in this year’s Proud of Barnsley awards, Luke said: “I’m completely gobsmacked.
“I’ve never been praised for anything really so this comes as quite the shock.
“I never thought that we’d get anything like this from it.
“It’s not something you really think about.”
The fundraising group haven’t much more planned for the rest of the year – but they’ll continue with their annual charity match and challenges next year.
“We’ve not got anything planned for the next few months but we do plan on doing something every year,” he added.