Cross-UK relay to fund treatment for girl with rare sight loss condition

Caitlin is living with Bardet-Biedl Syndrome, which threatens to take away her eyesight in the next few years.

A cross-UK rally to fund ground-breaking treatment to save a little girl’s eyesight has got underway.

Liam and Ashley Wilkie, from Kirriemuir, Angus, have kicked off the fundraising challenge ‘Carry the Gene’, a relay which will see volunteers run, walk and cycle from John O’ Groats to Land’s End.

Their daughter Caitlin, eight, was diagnosed with Bardet-Biedl Syndrome in 2017.

She is one of only seven children in Scotland to live with the condition, which can cause learning difficulties, heart and kidney failure, sight loss and obesity.

Caitlin has lost all of her night vision and cannot see in dim light.

Families, friends and pets joined the 13-mile run in Kirriemuir on Sunday before Caitlin handed over to a team of walkers, led by her gran.

Mr Wilkie told STV News: “It’s been absolutely manic if I’m being honest.

“Absolutely brilliant as well. Myself and my wife haven’t properly slept in a week with everything going on.

“The encouragement and the support from everyone around here has been phenomenal.

“It’s really driven us on, everyone’s done amazingly well so far.”

The challenge north of the border will be split into 12 legs and will continue next weekend before campaigners from other parts of the British Isles take the baton onto Ireland and then the South of England.

It’s not the first time the couple have thrown themselves into a money-raising campaign, having previously helped raise more than £100,000 for BBS research.

Gene therapy trials expected to start next year have given Caitlin’s family hope, although they have been hindered by lack of funding.

They said it’s a race against time to save their daughter’s sight and give her a better quality of life.

Mrs Wilkie said: “If we can get gene therapy to come in time then our little girl remains with day vision.

“Her night vision with the syndrome has pretty much gone.

“But if this gene therapy comes in time, then what eyesight Caitlin has just now could remain – rather than being classed as legally blind at some point in the coming years.”

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