22Q11 awareness is on the right track now

The train was officially renamed in a ceremony on Friday, which saw families joined by medical professionals, Alistair Burt MP and journalist and charity ambassador India Knight.

But this train is about more than looking good – it’s about raising awareness for a condition that affects some 35,000 people across the UK.

Imagine that you are the parent of a poorly child – one that suffers from a condition that could see them experiencing any combination of around 180 known medical side effects. These side effects could range from congenital heart defects or learning disabilities to hearing problems or mental health issues.

Now imagine that every time you see a health professional they look at you blankly when you tell them what condition your child suffers from.

For parents of children with 22Q11 Deletion Syndrome – which is the second most common chromosome disorder after Downs Syndrome – this is daily life.

Now, thanks to the efforts of Biggleswade train driver Mark Tripp, whose eight year old son Adam has 22Q11, the condition is being thrust into the spotlight.

On Friday parents gathered together to witness the renaming of the First Capital Connect train, before heading off to enjoy a family day out.

The event took place after Mark approached employer FCC to ask for help. And they threw their weight behind the campaign to raise awareness of 22Q11 and the Max Appeal charity, which supports families affected by it.

Mark explained: “It’s pretty soul destroying. You sit there and all the wounds and scars you’ve had over the years just keep being brought up again. When you’re repeatedly l
isting all of the issues with your children as opposed to the good bits it really does get you down.

“And the children have to sit there and listen to you explaining it to doctors over and over. It must make them think ‘no one understand me’.”

The lack of knowledge about 22Q11 can also have medical repercussions. Adam, who was not diagnosed until he was six, recently had risky and painful surgery to correct earlier treatment he would not have had if he had been diagnosed earlier.

Had the surgeon known that Adam had the condition, the surgery – which was routine but had a disastrous knock-on effect on Adam’s speech – would never have been performed.

Adam now receives lifelong treatment but many are not so lucky. He is appearing in a poster campaign across the FCC network to raise awareness and encourage better diagnosis of this condition.

As adults, sufferers go on to face a number of social and employment issues. A massive 90 per cent of 22Q11 sufferers have learning difficulties, while more than a quarter will develop schizophrenia. Because of their difficulties, many find themselves isolated and stigmatised.

The reaction to the rebranding of the train has already been massive, with the VCSF 22Q11 Foundation in Australia calling it the ‘biggest thing to happen in 22Q11 awareness’. News of the train has also been featured by the International Foundation in Philadelphia.

Mark said: “I’ve been flooded with messages, I can’t keep up with them. One family messaged me to say that in the last four years they never thought their daughter would smile again. Those kind of messages make it all worthwhile, but also tell me that there’s a lot more to do.”

Alistair Burt MP, who helped name the train, said: “I have been honoured to get to know the Tripp family and their son Adam who was diagnosed with 22Q11DS.

“Mark Tripp, an FCC driver and the inspiration behind the campaign, is an exceptional character and I have no doubt that this would not have taken off without his determination.

“This is a health issue that has not been high profile, but due to the determination of all involved at the Max Appeal, I know that awareness will be raised and more funds with it to keep up the research to ensure that diagnosis is earlier and treatment appropriate for those with the 22Q11 deletion syndrome. I am so pleased that FCC have got behind this appeal.”

Speaking on Friday Mark told his children: “When both my children were born I whispered the same thing to them, as they were obviously too young to remember only I have known what I said until now. Adam and Zoe I made a promise that daddy would be with you always, to guide and support you and to give you every chance in life. Well kids, this train is part of that promise.”

To find out more visit www. maxappeal.org.uk