Little Caitlin Wilkie is a determined three-year-old, her beautiful auburn hair often held up in bunches.

With her distinctive pink glasses, she has a smile which melts hearts wherever she goes.

Caitlin, who lives with her father Liam, mother Ashley and little sister Niamh in Kirriemuir, Angus, is a popular face around the small town.

"She is extremely loving, I think that is why she appeals to so many people, she is very good with her hugs," explains her proud dad.

Yet the smiling little girl is living with Bardet-Biedl Syndrome, an extremely rare genetic condition.

"She was brilliant as a baby, very content, we had no issues with her at all. She started sleeping through the night at eight weeks and was the ideal kid basically," her Liam recalls.

Caitlin was born with polydactyly, meaning she had one extra digit on both her hands and her feet.

Told it was 'just one of those things', Caitlin's parents saw her put through genetic testing but as nothing was picked up on, she then had operations on her hands and feet to remove the extra digits.

But Liam and Ashley noticed that their little girl still seemed different from other children her age.

"It was round about the year-and-a-half stage we started to think she's not walking, she's not talking, she's very late compared with all her peers," Liam says.

"We went back to the health visitor who referred us back to genetics to do further testing.

"It was only March last year when she was two and a half roughly when they came back and said it was the diagnosis of this rare syndrome."

Caitlin had Bardet-Biedl Syndrome (BBS), an extremely rare condition which affects just more than 500 people in the UK, with just four others living with the condition in Scotland.

A condition which is affected by the genes, the main symptoms include learning difficulties, developmental delays, obesity, blindness and heart and kidney problems which can dictate a patient's life expectancy.

Children as young as four living with BBS can pass away from kidney problems and as such, Caitlin is monitored regularly at hospital every few weeks.

"It put the fear of god into us, it was heartbreaking when we got the news," Liam says.

"At the same time it was nice to know what was up and it wasn't it just imagining things.

"At least we had an answer for it and we could actually have a plan of attack to help her out."

With obesity another symptom of BBS, Caitlin's parents have to be very aware of her weight to avoid putting any extra strain on her heart.

"Because of the gene deformity, she doesn't really have an off button," Liam explains.

"So she would just eat and eat and we've got to really control that. When she balloons in weight it puts extra stress on the heart so it's like a vicious cycle."

"It's kind of like sitting on a ticking time bomb, that could change any time at all," Liam notes soberly.

"You have to take every day and every week as it comes."

While Caitlin's diagnosis has shocked her family, it has brought the town of Kirriemuir closer together.

Following the little girl's diagnosis, the Wilkie family were put in touch with BBS UK, the only UK charity which supports those diagnosed with Bardet-Biedl Syndrome, their parents and carers.

After discovering the charity was staffed by volunteers and run on very little money in comparison to other organisations, the Wilkie family made it their mission to spread the word about BBS and raise as much money as possible for the charity.

Hosting race nights, tombola stalls, sponsored cycles and runs and selling charity wristbands which have been worn by some Scotland rugby players, the family have worked tirelessly to raise money.

An army of walkers travelled from Culloden to Glen Clova, recreating the route Lord Ogilvy and the jacobites took after the battle of Culloden for the charity.

Caitlin even waved off her army and handed out hugs to all those fighting for her condition to be recognised.

The town's efforts have helped raise £41,000 for the charity in just under a year.

"The amazing endeavours of the Wilkie family and all those supporting them means so much to BBS UK not only because of the amounts being raised but also in the importance of raising awareness about our rare genetic condition which affects only around 540 people in the UK," explains Abbie Geeson from BBS UK.

"They are an inspiration of what can be achieved. We need as many people as possible to hear our stories and understand our unique syndrome as it impacts all our lives in so many different ways.

"Raising awareness leads to understanding our BBS community to break down barriers to acceptance and inclusion."

For the Wilkie's, their main focus has been BBS UK's work on a new treatment which could postpone or delay the deterioration of sight in the syndrome.

"We found out there was gene therapy ongoing at Great Ormond Street Hospital," Liam says.

"They basically inject the affected gene back into the retina of your eye and it can help postpone or delay the eyesight loss of it but they've only been testing it in laboratories just now.

"The results they've been getting have been fantastic and they hope to start testing it on human trials soon, but they've got to get it through the legality stage which could be two or three years away."

While Caitlin would be a perfect candidate for such a therapy, she has lost her night time vision, meaning she often bumps into things in the dark.

Degeneration has also begun in the rods in the back of her eye, a typical symptom of the syndrome, but the Wilkie family are determined to keep fighting for their little girl and take each day as it comes.

Caitlin is starting to communicate with a small vocabulary of words and is able to walk a little although can get tired easily and needs help, even with the smallest things like stepping off a pavement or getting dressed.

"She's not anywhere as near as independent as other three-year-olds but she will get there, it just takes a lot of extra time and effort," Liam adds.

Despite her condition, Liam says their little girl is still as happy as any other tot.

Recently placed in mainstream nursery alongside all her friends, she loves the outdoors and is extremely stubborn, refusing to let anything hold her back.

Delighted that Caitlin was allowed to join her local nursery rather than attend a specialist school, Liam hopes that the awareness in the small town of Kirriemuir will mean that people will know her story and won't single her out.

"[Nursery] gets her mingled in with all her wee pals that stay around about her, it's not going to separate her out and isolate her from everyone else and highlight the differences that she is going to struggle with," he says.

While the family do not know what the future could hold for Caitlin, they are trying their best to simply make memories with their loving, stubborn little girl.

"She's just a lovable wee rouge really," her father laughs.