Fundraisers ‘Carry the Gene’ for Caitlin from BT Murrayfield

The John o’ Groats to Lands’ End challenge was the brainchild of Ashley and Liam Wilkie, whose daughter Caitlin Wilkie (aged 8) is just one in seven people in Scotland living with Bardet-Biedl Syndrome (BBS).

BBS is a rare, recessively inherited genetic disorder which affects approximately one in 100,000 babies born. The condition varies between those who have it, but common characteristics of the condition include retinal degeneration, kidney failure and learning disabilities.

Carry the Gene began on 19 April, starting at John O’ Groats, and involves different sections of either cycling, walking or running across the country, including Ireland.

The Scotland route has been comprised of 12 sections:

• John o’ Groats to Braemar (250 mile cycle)
• Braemar to Glen Clova (18 mile walk)
• Glen Clova to Kirriemuir (13 mile run)
• Kirriemuir to Strathmore Rugby Club (6 mile walk)
• Strathmore Rugby Club to Newtyle (10 mile run/cycle)
• Newtyle to Dundee (13 mile cycle)
• Dundee to Tentsmuir (13 mile run)
• Tentsmuir to St Andrews (10 mile cycle)
• St Andrews to Forth Road Bridge (70 mile walk)
• Forth Road Bridge to Murrayfield (13 mile run)
• Murrayfield to Melrose (45 mile cycle)
• Melrose to Borders (45 mile walk)

At the end of each section a ‘gene’ in the form of a purple baton is being passed along to the next group.

So far more than 350 people have signed up to take part in the Scottish sections of the challenge, helping to raise more than £30,000 for BBSUK and raise awareness for the condition.

Left to right: Caitlin in her Strathie Sharks kit at training, Niamh with the Carry the Gene baton at BT Murrayfield, Niamh and Caitlin together at BT Murrayfield.

The money raised will allow BBSUK to provide support to those living with BBS and important research, including gene therapy.

Ashley Wilkie, Caitlin’s mother is excited by the prospects of gene therapy saying: “Gene therapy is at an extremely exciting stage and has the potential to help prolong vision. Caitlin, at present, has lost all her night vision and cannot see in dim light. We want to help the charity with this as much as we can to give Caitlin and all others with the condition the best chance of potentially prolonging their sight.

“The support has been quite overwhelming. When we started planning and seeing who might be interested in taking part, we thought we might get four to six people per leg, but we’ve had people sign up in their droves to take part, especially in our hometown of Kirriemuir.

“It’s been incredible. Our original target was £5,000 and it’s now more than six times as much.”

Amongst those taking part have been former Scotland internationals John Barclay and Ben Cairns.

But that’s not where the rugby connection stops.

The Wilkies are an avid rugby family as season pass holders at BT Murrayfield and involved with Strathmore Rugby Club in Forfar.

Caitlin, along with sister Niamh (aged 5) both play rugby in the youth section known as the Strathie Sharks.

“Strathmore is a fantastic club, they are so inclusive”, said Ashley.

“Caitlin is so well supported by the coaches and her peers, and she has a great time playing rugby. It’s great exercise for her and very social.

“As a family we are so passionate about the sport, and to see that Caitlin can participate with children her age is fantastic. Strathmore have different sections for different people with additional needs, so Caitlin may move away from the mainstream group at some point as her vision changes but for now she’s very happy where she is.”

If you’d like to support the ‘Carry the Gene’ challenge, you can make a donation via Just Giving.