WHEN 12-year-old Jennifer Lynch was first diagnosed with an extremely rare degenerative condition, the only information available to her parents was ‘full of medical jargon and very scary’.
Four years later, Tracy and Paul Lynch, of Church Way, Tarring, are the driving force behind Wolfram Syndrome UK – the only charity and online support group for the condition in the UK.
Wolfram Syndrome (WS) is a progressive condition which affects one in 770,000 people in the UK. The main health problems associated with the incurable condition are hearing and sight loss, and diabetes.
Tracy said: “She has a very wicked sense of humour, she has quite a cheeky personality but she’s also very quiet and that’s down to the condition.”
She added that Jennifer – a pupil at Thomas A Becket Middle School – is ‘very proficient’ in Braille and touch typing.
In 2007, a trip to the optician revealed that Jennifer had a condition called nystagmus – an involuntary eye movement which may lead to reduced vision. It was to be the first step of a three-year journey towards being diagnosed with WS.
Jennifer was referred to Great Ormond Street Hospital for further tests to find the cause of her nystagmus. An MRI scan showed that she had an issue with her brain and she was referred to see a neurologist.
In January, 2008, Jennifer was diagnosed with type 1 diabetes and became insulin dependent.
Two years later, in March, 2010, she was finally diagnosed with WS.
Tracy said she had first looked up the condition two years previously. She said: “I was reading and I wished I hadn’t, because it said they will go completely blind and deaf and their life expectancy is 30 to 40 years.”
A website about WS, suggested to Tracy and Paul by a consultant at Great Ormond Street, was ‘full of lots of medical speak’ and was ‘very scary’, according to Tracy. It was this lack of approachable material which led to the couple setting up Wolfram Syndrome UK.
“There was nothing out there, really,” said Tracy. “My husband said we’ve got to do something about this and so set about creating a website for UK families with an online support group.”
On June 17, 2013, it officially became a registered charity – Tracy is chief executive, Paul is head of fundraising and there are six trustees – Paul’s brother Darren Lynch, family friend Alan Nye, professor Tim Barrett from Birmingham Children’s Hospital, Sir Robert Woodard Academy teacher Michael Chandler, and mother and daughter Samantha and Amy Hawkins. Tracy said: “We all understand what it is and what families affected by it will want to know. Our aim is not only to help fund research but to provide support.”
Since becoming a charity, Wolfram Syndrome UK has raised more than £13,000 through a variety of fundraising events, the most recent of which was a non-uniform day at Thomas A Becket Middle School.
Jennifer’s brother Iain, 18, will be running the Brighton marathon for the charity.
To donate, visit mydonate.bt.com/fundraisers/iainlynch1