Their precious little daughter, Caitlin, is one of just seven Scots youngsters suffering from a little-known condition that threatens to take their sight before the teenage years.
Now, doting Kirriemuir parents Liam and Ashley Wilkie are pushing ahead with the second phase of a remarkable fundraising campaign that has already topped the £100,000 mark for the genetic condition Bardet Biedl Syndrome.
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.
The different stages, offering cycling, running and walking options for fundraisers, will take in Braemar, Glen Clova, Kirriemuir, Forfar (Strathmore Rugby Club), Newtyle, Dundee, Tentsmuir, St Andrews, the Fife Coastal Walk, the Forth Bridge, Murrayfield and Melrose.
Family ‘devastated’ by BBS diagnosis
Five years ago, following extensive tests, North Muir primary three pupil Caitlin, now 8, became the first-ever child diagnosed at Ninewells Infirmary with BBS.
Liam, 38, a construction director with Dundee-based civil engineering contractors Kilmac, and Thrums veterinary associate director Ashley, 42, have thrown themselves into raising awareness and money for research.
“The main issues with BBS sufferers are heart and kidney failure, obesity, learning difficulties and sight loss, usually by the teenage years,” Liam said.
“We were devastated at the diagnosis, but Ninewells put us in touch with the only UK charity for the syndrome, BBSUK, which is run by volunteers and relies on grants and fundraising.”
The pandemic impacted the research timetable at Great Ormond Street Hospital for Children but now a leading geneticist has held out hope for sufferers and their families.
“Caitlin goes to clinics at Great Ormond Street every year and we have been told gene therapy and human trials are now set for 2024,” said Liam.
“This is amazing news, not just for us but for the other youngsters who still haven’t lost too much of their vision.
“As with most things in life, progress with research hinges on finance.
“That’s what spurred us on to a year of intensive fundraising in 2018 which, incredibly, raised just over £100,000.
“Kilmac and the staff, who come from across Tayside, along with Thrums Vets, have been behind us all the way.
She is well loved and there is a little army in Kirrie ready to look after her if her sight does go.”
Dad Liam
“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.
“With the pandemic behind us, Ashley and I wanted to do something big this year that could include the whole BBS population.
“We came up with the idea of ‘Carry the Gene’ involving a BBS baton.
“Each section will involve groups of around 10 and, 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.”
“Most people with BBS are visually impaired but while they might not be able to get out on roads and paths, they are keen to get involved to raise precious funds.”
The Wilkies, who also have a five-year-old daughter Niamh, have been amazed by the support from friends, colleagues and the Kirriemuir community.
“The help and support have been phenomenal,” admitted Liam.
“The whole town has got behind us. Everyone seems to know Caitlin when we are out and about.
“She is well loved and there is a little army in Kirrie ready to look after her if her sight does go.
“Caitlin is fairly stable with regards to the heart and kidneys but she has lost night vision and struggles to see in dim light.
‘So close to human trials’ for BBS
“While a lot of kids were getting bikes for Christmas Caitlin missed out.
“We also have to watch with her appetite. There is no off button when it comes to eating.
“But to be so close to human trials for the sight is absolutely amazing.
“If it comes too late for Caitlin I will take it on the chin. But the research might not be too late to help someone else’s child a year or two down the road.
“Right now it’s all about making memories for us and with Caitlin and ensuring she gets every opportunity she deserves.
“We do feel as if we are on a ticking timebomb, but the fundraising has been a great help in taking our minds off it.”
Five years ago, more than 70 supporters raised £17,000 by completing the Dundee Kiltwalk.
“This challenge will involve even more supporters in spreading awareness of the condition,” said Liam.
- Businesses and individuals keen to sponsor legs of the Carry the Gene Challenge can donate at justgiving.com/crowdfunding/carrythegeneteamscotland. Alternatively, email liam@kilmac.co.uk to contact Liam.
