Precious daughter Caitlin (8) is one of just seven Scots youngsters suffering from a little-known condition which threatens to snatch away their sight before the teenage years.
Now doting parents Liam and Ashley Wilkie are pushing ahead with the second phase of a remarkable fundraising campaign which has already topped the £100,000 mark, for research into the genetic condition Bardet Biedl Syndrome.
Symptoms include heart and kidney failure, obesity, learning difficulties and sight loss, usually by the teenage years.
An ambitious ‘Carry the Gene Challenge’ will see family, friends and business contacts supporting a relay spread over 12 legs from John O’Groats on April 18 to the Borders south of Melrose.
After the festive season excesses, a clutch of Liam’s Perth-based colleagues with civil engineering contractors Kilmac are gearing up to join in.
Huntingtower-based Lawrence O’Brien (37), whose groundworks and plant specialists O’Brien and Sons have been hooked-up with Kilmac for the past 18 years, hadn’t heard of BBS until Caitlin (8) became the first ever child to be diagnosed with the condition at Ninewells Infirmary five years ago.
“I met Liam through work and we became good pals,” explained Lawrence.
“Kilmac are a tight knit team and are very supportive of Liam and Ashley. When they came up with this latest fundraising plan, I was always going to sign up. The family are such genuine, nice people.
“Caitlin goes to clinics at Great Ormond Street every year and gene therapy and human trials are now set for 2024.
“Anything we can do to help Caitlin even a little bit has to be worthwhile. When it is so close to home obviously you go the extra mile to help.”
The Carry the Gene Challenge stages offer cycling, running and walking options for fundraisers, taking in Braemar, Glen Clova, Kirriemuir, Forfar (Strathmore Rugby Club), Newtyle, Dundee, Tentsmuir, St Andrews, the Fife Coastal Walk, the Forth Bridge, Murrayfield and Melrose.
Liam said: “Now that the holidays are over, we will be pressing ahead with plans to get corporate backers on board for each leg to provide supporters with their name on T-shirts. The baton will be handed over at the border. In England and Ireland BBS sufferers and supporters will complete the virtual run to Land’s End on treadmills in the gym or by other virtual means.”
Liam (38), a construction director with Kilmac, and Thrums veterinary associate director Ashley (42), have thrown themselves into raising awareness and money for research since Caitlin’s diagnosis.
“As with most things in life, progress into research hinges on finance,” said Liam.
“That’s what spurred us on to a year of intensive fundraising in 2018 which, incredibly, raised just over £100,000.
“We are determined to push ahead with fundraising if it holds out hope to save Caitlin’s sight or for other youngsters. Whatever happens, we can hold our heads high and say we did our best for our daughter.”
Lawrence has been over the course before for Caitlin.
“The first cycle we did was four days from Fort William to Oban via Mull just before Covid,” he recalled.
“Kilmac and staff from across Tayside have been playing their part with various fundraisers. This will be a challenge but I do plenty of mountain biking so I should be fine. I’m not sure about the others!
“The first leg is the John O’ Groats to Braemar section. Liam doesn’t choose easy routes. I’m not sure he could have picked a tougher one and I suspect there will still be snow on the hills come April.”
Lawrence is confident the business community will rally round the fundraiser by sponsoring legs of the Carry the Gene Challenge.
He said: “Like most people I had never heard of the condition until Caitlin was diagnosed. The money raised will help push forward with the research designed to help with the eyesight of the youngsters affected. Hopefully it gives Caitlin a chance to keep her sight for as long as possible and continue to raise awareness.”
Those keen to sponsor legs of the Carry the Gene Challenge can contact Liam at liam@kilmac.co.uk and donate at www.justgiving.com/crowdfunding/carrythegeneteamscotland
