This week sees the fifth anniversary of Joseph’s Goal, the charity our family set up in 2012 to try to find a cure for Non-Ketotic Hyperglycinemia, (NKH), the life-limiting genetic disorder our little boy, Joseph, was unfortunately born with.
When Joe was born, in May 2009, the prognosis could not have been more bleak. He wasn’t expected to make it out of hospital.
If he did somehow achieve this feat most families take for granted, we were told to make the most of the short time we had him at home.
Thankfully – and amazingly – Joe showed us what a fighter he is, defying the doctors, and the odds, in the process.
And when he’d reached the age of three in 2012, we decided we had to do something more to help him – and others like him.
What started as a simple idea to embark on a bike ride to a Wigan Athletic away game soon turned into something truly incredible.
To the extent that we recently passed through the £400,000 fundraising mark – money which has all been divided up between the two leading researchers into NKH in the world, Dr Johan Van Hove at the University of Colorado, and Professor Nick Greene of University College, London.
The vast majority of this has been raised by the generosity of the people of Wigan, and it is this sense of community and family that has underpinned the charity.
The two major sporting teams in the borough – Latics and Warriors – have been always been staunch supporters.
Who could forget little Joe being carried out at Wembley by Latics captain, Emmerson Boyce, as mascot at the FA Cup Final against Manchester City in 2013? Not us.
Being in the tunnel at Wembley that day was an experience that will live with me, personally, for ever.
We’d done all the dress rehearsals, with everyone assuming Joe would be pushed out in his wheelchair.
Then Boycey appeared out of the dressing room, at the head of the Latics line, and said: “Would you mind if I carried him on to the field? He’s one of us.”
Boycey, and his wife, Lucy, have been incredible in their support for our charity, as indeed has Warriors captain Sean O’Loughlin, and his wife, Sarah.
Just weeks after Boycey lifted the FA Cup, Lockers did likewise with the Challenge Cup for the Warriors, wearing a Joseph’s Goal wristband to boost the awareness.
The following year, it was the turn of Lucy and Sarah to have their moments in the limelight, as they – after surprisingly little persuasion – dunked their husbands as part of our special ice-bucket challenge.
We’re proud to call both Boycey and Lockers ambassadors of Joseph’s Goal, alongside several other figures who have gone out of their way to show interest in and desire to support Joe – including Roberto Martinez, Pat Richards, Will Grigg and Ryan Sutton.
And we’ve been lucky enough to have countless other celebrities showing their support in our search for a cure for NKH.
In 2012, weeks after the birth of the charity, TV presenter Alex Brooker – a friend of the family and former work colleague of mine – won £25,000 in a Celebrity version of C4’s ‘Million Pound Drop’.
We’ve also seen global superstarslike Jessica Ennis, Wayne Rooney, the Brownlee brothers, Luis Suarez, Sam Tomkins, Carlos Tevez and Sir Bobby Charlton with wristbands to spread the word.
Being named ‘Family of the Year’ at the Wish FM Local Heroes Awards in 2013 was a tremendous honour, as was being invited by Wigan Council to switch on the Christmas lights in 2014.
People ask us: “What is Joseph’s ‘Actual’ Goal?”
Simply, it is to raise enough money to fund research into NKH for new and better treatments and, eventually, a cure, – hopefully in time for Joe to benefit.
We’ve organised conferences for NKH families here in Wigan – at which both Dr Van Hove and Prof Greene presented their latest research – as well as twice visiting Boston, USA, to represent UK families and contribute to NKH conferences at Harvard University.
Advances in gene therapy have raised hopes that a breakthrough is on the horizon – the defective gene that causes NKH has been identified and the task is to successfully replace it with a healthy gene in clinical trials.
Joseph’s Goal has received a letter from Prof Greene acknowledging that continued funding from the charity has accelerated his research into NKH by 18 months – a staggering achievement, and one we could not have done without the incredible support shown by people like you.
JOSEPH’S GOAL IS MAKING A DIFFERENCE!
For the future, there is at last light at the end of a very dark tunnel, but more funding is vital to make it happen.
Joseph is now eight years old, and is believed to be the oldest boy of only 15 children in the UK – and less than 500 worldwide – living with this dreadful condition.
Joseph’s Goal is still the only UK charity raising funds for NKH research, and is run entirely by volunteers.
Every single penny raised forJoseph’s Goal makes a real difference for Joseph and other children like him living with NKH.
To help celebrate the fifth anniversary, could YOU help to achieve Joseph’s Goal?
It could literally be anything – running a 10k, a half-marathon, holding a Christmas jumper day at work, Dry January, Wet January (donate for every drink you consume!)...it’s up to you!
Please contact facebook.com/josephsgoal or @JosephsGoal on Twitter for any details!
Thank you so much – together we can achieve Joseph’s Goal.