IT was a landmark moment as pioneering charity Joseph’s Goal handed over a huge cheque.
Significant advances are now being made into researching Non-Ketotic Hyperglycinemia (NKH), the extremely debilitating condition from which the charity’s inspiration, six-year-old Joseph Kendrick, was diagnosed.
And the amazing total of £200,000 is all down to Wigan Evening Post readers’ kind donations who were warmly thanked by his family today.
Next month will mark three years since Joseph’s Goal was set up by his parents, the paper’s football correspondent Paul Kendrick and his wife Emma.
Since then, thousands of Wiganers have taken it upon themselves to raise funds aimed at finding a cure for NKH.
The charity also gained global exposure when little Joseph, who requires round-the-clock care, was the lucky mascot during Wigan Athletic’s FA Cup final triumph, where he was carried out by captain Emmerson Boyce.
That association with Latics has helped Joseph’s Goal massively with club and fans coming together to do their bit.
Dr Johan Van Hove, the leading specialist in the metabolic disorder, flew over from Colorado this week to talk to parents of children with the illness at a North West conference arranged by Joseph’s Goal.
He has received every penny raised by the charity, who celebrated the $250,000 mark with a big cheque presentation.
The get-together at the Haydock Holiday Inn took place in the aftermath of the Wigan 10k run in which more than 100 people ran in aid of the charity.
Little Joseph himself was also pushed around the course by mum Emma.
There was an overwhelming attendance from NKH families - travelling from Sweden, London, Sheffield, Lincolnshire, Cheshire, Cumbria, Newcastle and Preston.
Dr Van Hove revealed his latest research findings, and gave further details of future therapies and treatments for the currently life-limiting disorder.
He has now managed to map 527 NKH children’s genes from around the world, directly using Joseph’s Goal’s money, and has discovered how specific genes affect the severity of the disorder and why NKH makes the brain so sick.
“It was fantastic to meet Dr Van Hove again,” said Emma. “Hearing that a therapy is on the horizon and one that could help Joseph was music to our ears. Hopefully the new treatment will be available in the next three years – but only if funding allows.”
“Obviously, this means the world to us, but it is now critical that we up our game and raise even more money to ensure that the new treatment is found before our time with Joe runs out.
“After thanking Dr Van Hove at the end of his research update, we directly pleaded to the other NKH parents in the room that, now a treatment is around the corner, it is essential that we all fundraise together as much as we can to maintain the funds necessary to complete the therapy study and to achieve a product that can then be used to help our poor children.”
Dad Paul added: “It was amazing and heart-warming to hear how Joseph’s Goal funds have directly allowed Dr Van Hove to make huge steps forward with his research – and treatment that could help Joe is literally just around the corner.
“We’d just like to say a massive thanks again to the people of Wigan, who have underpinned the charity from day one, and should feel incredibly proud that their kindness and generosity is making a real difference to kids like Joe everywhere.”