A couple from Wigan hope that years of fundraising could lead to a breakthrough which will improve life for their son who has a rare medical condition.
Joseph Kendrick has been defying the odds ever since he was born. Parents Emma and Paul were told he would not survive beyond ten days and when he passed that milestone doctors said he was unlikely to see his first birthday.
Joseph, who lives with his parents and two brothers in Wigan, was born with Non-Ketotic Hyperglycinemia, a rare genetic disorder that affects just 500 people around the world.
He is now ten years old and Emma is hopeful that a medical breakthrough could soon be made which will improve his quality of life.
His parents launched a charity in 2012 to raise money for research into the condition which causes a build up of glycine in the brain, leading to seizures and developmental delay.
Emma said: 'All the money we raise goes to NKH research and there is a possibility that through gene therapy there could soon be a breakthrough.
'I don't know what difference it would make to Joe - it could make his seizures stop, make him able to understand more, or move more. It has to be something that should improve things for Joe in some way, and it should give real hope to parents with younger children with the condition.'
Although he'd had hiccups before he was born, there was no suggestion that anything was wrong. Emma, who was teaching in a primary school until she was 37 weeks pregnant, said: 'You think it'll never happen to you. I had an unremarkable pregnancy, he had been quite hiccuppy - that's not to scare other pregnant women, it does happen - but in Joe's case they would go on for hours and we were later told that was the start of his seizures. We have since have heard other parents with children who have the same condition describe the same symptoms.
'I had an emergency c-section and I heard one of the midwives say 'We'll have to watch this one, he's a bit quiet'. I thought it was because I'd had a troublesome labour but he deteriorated. He wasn't feeding, waking or crying. He was just very still and very quiet and he was taken to the intensive care unit. The nurses kept telling me he'd be fine and not to worry but days went by and he didn't get any better.'
A lumbar puncture revealed abnormally high glycine levels and Emma and Paul were told to prepare for the worst.
'I've never experienced anything like it,' Emma said. 'We were so excited to see our healthy bouncing baby and them - wham! - everything just stops. We were told he was not going to make it past ten days and that he would just stop breathing and die.
'Things are just a blur for me from then. We were at his bedside all the time but ten days came and went and when Joe was about a month old we were told we could take him home. We were told to make the time we had with him special - to give him lots of cuddles and to make some happy memories. Christmasses and birthdays came and each time we were thinking he wouldn't be with us for the next one. But he clearly has his own plan.'
Joseph was born in Leeds and the family moved to Wigan when he was six to be closer to Emma and Paul's parents. He now attends Hope School which caters specifically for young people with severe learning difficulties and complex physical and medical needs.
'He is quite still, and he's like a very big beautiful newborn,' Emma added. 'He's not hit many milestones but he's very content - he can shout when he's not happy and he doesn't shout often.
'He spends a lot of time in his chair and we include him in everything we do as a family. Things are more difficult now he's getting bigger and older - we have a hoist at home, but we still try to get away and stay in hotels and do normal family things.
'He's the focal point of the family and he inspires us. Joe is very resilient and although we've been through some very worrying times, he's still here. We don't sit around crying - yes, we have an inner sadness and we will never be the same people again - but instead of being sad we decided to fight for Joe.'
Through the charity Joseph's Goal they have raised £650,000 through a range of events from all-star football matches and sponsored walks to an annual ball.
Joseph's dad Paul is the Wigan Athletic reporter for the Wigan Observer and through his connections at the club, Joseph led the team onto the pitch for the 2013 FA Cup Final when they beat Manchester City. Fans have also joined the family on walks to away games - earlier this year a group walked from Wigan to Elland Road in Leeds.
'In the beginning we were pleading with people to do things to raise money but there is such a phenomenal community spirit in Wigan that people are organising things all the time now,' Emma added. 'The response from people in Wigan has been truly heartwarming.' u
To help with fundraising, or for more information, go to josephsgoal.org.
