An Alexandria mum whose daughter has a rare condition has revealed how her family’s life has been helped back on track, thanks to a parent-run disability forum.

Julie Ann Fletcher’s daughter Leah, 17 was diagnosed with Williams Syndrome at 10 months old, causing problems with her global development, her heart and kidneys, and her fine motor skills.

The mum-of-two says that as Leah grew up, her over-trusting personality and sensitivity, also due to the condition, could make it difficult at times to get out and about socially as a family.

With no specific help group nearby for William’s Syndrome, Julie Ann says that the family would increasingly find it much easier to stay in the house.

But when Leah started at Kilpatrick Secondary School, Julie Ann discovered the Dumbarton District Disability Children’s Forum (DDDCF) - a group offering support for the area’s families with a child with any disability.

Through the group, the family have been brought out of feeling isolated into a group which has created the opportunity to expand Leah’s longing for a social circle, and a degree of much needed personal independence.

“There is nothing at all locally, specifically for Williams Syndrome,” Julie Ann, 55, told the Reporter.

“I used to try and find places for her to go, but there were no groups we could find.

“The condition makes Leah very friendly. Very loving and trusting. If she met you you’d be her best friend within minutes.

“We were finding it hard for Leah to get out. It was very hard to find where we as a family fitted in.

“She was craving to do what all the other kids had done.”

Meeting up every month, DDDCF offer activities, days out, and even holidays at a caravan in Ayr to allow its members a chance to enjoy quality time together in a safe and supportive network.

Julie Ann said: “The group are amazing. You are not alone. We get help through the group. You pick up tips and things to try.

“The children are all different with their own challenges. The big thing we take from the group is that as a family we are not so different.

We can now go out to the numerous outings the group provides in the knowledge that no matter what happens we will never be judged.

“If we’d have gone out on our own, if she’d get fed up half way through then we’d have to leave. But now there’s always other families willing to say, ‘Come with us,’ and you know they’re safe. They’re getting a full day out.

“We’ll all go to the Christmas panto, and places we’ve never been before.

“There’s also a caravan in Ayr which is a life saver come holiday time, as it is well equipped for all the needs of the families that use it.

The impact DDDCF has had on our family has been so transformative, it has even encouraged Julie Anne to set up her own group

She said: “My husband, myself, my sister and a family friend started a disability Youth club up which came about from listening to what other families at the group felt was missing locally.

“It’s called ‘Our Club’, it’s at the Adult Training Centre in Dumbarton on the last Friday of the month.

“It’s for high school ages up to 25. A few of Leah’s friends from main stream school come along and help at the club too.”

And Julie Ann commended Pamela McMartin, one of the forum organisers, for welcoming her family in and showing them a way forward.

She said: “Pamela opened so many closed doors for us and gave us the confidence & support we needed.

“The group is so friendly. It is non-specific for disabilities. The children are very close, as are their siblings. It gives you this extended family you can trust. It makes you feel ‘normal’, if there’s such a thing.

“I would never have found that without Pamela’s group. I would still be trying to find how to break out of comfort of the four walls of our house. But you need to open the door and let the children see and learn from their mistakes.

“People always say, ‘I don’t know how you manage, you are doing a great job,’ but we are still learning as we go along, but you do what you can do."

And looking to the future, Julie Ann hopes that society can adapt to allow all children, whatever their abilities, to find their place in the world and be accepted.

“My hopes would be that the children are accepted for who they are, Julie Ann added. “There’s potential in every child. Leah achieves in other ways.

“Leah may not be able read or write but she’s the most loving, positive, happy go lucky girl you could ever meet and once you have met her you will never forget her.

“The hope is that when she finishes secondary school this summer, she will move on to college.

“Given the chance there is achievement in everything.”