Caitlin ‘Carries the Gene’ and the match ball

This initiative follows on from their ‘Carry the Gene’ challenge to fund vital research into Bardet Biedl Syndrome (BBS).

Eight-year-old Caitlin Wilkie, was diagnosed with BBS in 2017.

This is an extremely rare genetic condition with symptoms including heart issues, kidney failure, learning difficulties, obesity and sight loss usually by teenage years.

BBS is an extremely rare condition which only effects around 700 people in the UK with only seven known cases in Scotland.

Caitlin, who is a member of Strathmore Rugby Club, has lost all her night vision and cannot see in dim light as a result of her condition.

Caitlin’s parents, Ashley and Liam recently led Team Scotland in a challenge for BBS UK to support fundraising for vital gene therapy research called, ‘Carry The Gene’.

The challenge saw a baton transported by runners, walkers and cyclists from John ‘O Groats to the Borders, where it then made its journey across to Ireland and England to reach Lands’ End.

The team’s original target was £5,000 but as of today, combined with the Team Ireland and Team England fundraisers, they have raised more than £150,000 for BBS UK.

Caitlin’s mother, Ashley, is excited by the prospects of gene therapy. She said: “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.”

Rugby means a lot to the Wilkie family.

An avid rugby family as season pass holders at Scottish Gas Murrayfield, they are also 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.”

Earlier this week, in partnership with the BBC One Show, Scottish Rugby surprised the family with a special tour of the Scotland team’s training facilities at Oriam and a chance to see the squad prepare for this weekend’s game against Italy.

The Wilkie family with Matt and Zander Fagerson.

There, the family were further surprised with an invitation from Matt and Zander Fagerson to do this weekend’s match ball presentation in recognition for their work to raise awareness and vital funds for BBS.

Following on from their unique experience this week, Caitlin’s dad, Liam said: “Tuesday was an unbelievable experience which caught us completely cold! We are still trying to process it all!

“We have really enjoyed organising and taking part in the ‘Carry the Gene’ challenge and associated fundraising. Seeing how well it has been supported, it really has been overwhelming throughout for the family but to have it topped off with the surprise on Tuesday followed by Caitlin presenting the match ball on Saturday really will leave us with memories of a lifetime.

“If Caitlin continues to lose her sight before gene therapy kicks in, it is extremely heart-warming for us to know Scottish Rugby have left her with the most amazing memory to treasure.”

And of course, the star herself is extremely excited to run out onto the Scottish Gas Murrayfield pitch. Caitlin added: “Tuesday was amazing as I got to meet the Scotland boys and they told me I’m delivering the match ball. I can’t wait to do this!”