A CAMPAIGN has been launched in honour of a brave young boy whose mother grew up in the island.
Three-year-old Joseph Michael Kendrick has the extremely rare genetic disorder – Non-Ketotic Hyperglycinemia (NKH) – and their local paper, the Wigan Evening Post, hopes to raise money to fund much-needed research into the condition.
Joe’s mother, Emma, aged 35, was born in Preston before the family moved to the island when she was six.
She attended Rushen Infants and Juniors and Castle Rushen High School and her parents, Bob and Loreto, live in Port Erin, where they own the Falcon’s Nest Hotel. His father, Paul, also 35, is the Evening Post and Observer’s Wigan Athletic correspondent.
The couple had to endure the heartache of being told their son would not make it home from hospital, and then that Joe may struggle to live beyond six months. But, three years on, Joe is now in a stable condition with medication helping to keep his disorder in check.
Paul said: ‘He has shown us he wants to fight all the way, and we are determined to fight on his behalf to help create awareness of this devastating condition, find a better treatment for him and others, and one day find a cure.
‘As parents, we are very proud of our strong and resilient young boy. He has done so well, and exceeded all expectations.’
Emma, a teacher, said: ‘I think the first and foremost goal for us is to create awareness, as this is such a little-known disease with only about 20 to 30 families in the UK affected.
‘No-one has been prepared in the past to put any money towards trying to find a cure or better treatment, so first of all we need to raise awareness and then secondly to help find better treatment or a cure.’
Joseph’s Goal, launched on Monday, received £25,000 after television presenter Alex Brooker – a friend of Paul – won £100,000 on the Million Pound Drop, with comedian Josh Widdicombe.
Wigan Athletic has also shown its support. Squad members met Joe and his brother Sam, aged 18 months, at their Christopher Park training ground.
To show your support, follow @josephsgoal on Twitter, or visit www.josephsgoal.org.
To make a donation visit www.everyclick.com/josephsgoal.
• Non-Ketotic Hyperglycinemia affects one in 60,000 infants born. Children with the condition have problems breaking down the amino acid glycine, an important molecule in the brain with functions such as transmitting signals from one brain cell to another.
Excessive glycine disrupts brain function. Typical symptoms include seizures, low muscle tone and severe problems with learning and development.
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Wednesday 22 May 2013
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