FOR most couples, the diagnosis that a child has a learning disability would be devastating: to have two children diagnosed at the same time would, for many, be unimaginable.

But for a Peebles couple that became a reality when their twin sons were diagnosed with Fragile X Syndrome. Craig and Gillian McDonald had known for a long time that something was not right with the developmental progress of their twins Stuart and Matthew, but had never received any official underlying diagnosis.

“We were aware from a very early age that the boys were not progressing typically and were very slow to start to crawl, walk and talk – their speech was also very poor, with few words and often very garbled,” said Craig.

“It was originally put down to the fact that they were twins, they were boys and were premature after being born five weeks early, although lots of people were happy enough to acknowledge that they were lovely boys, which they are.

“Nothing was diagnosed by the consultant paediatrician and things like autism, Aspergers. ADHD and dyslexia/dyspraxia were all ruled out, but at no time was Fragile X Syndrome mentioned or a simple blood test for Fragile X Syndrome even suggested.

“They were eventually diagnosed six years ago at the age of 10 when they attended a hospital appointment to have some teeth removed under general anaesthetic. We had only recently heard something about Fragile X Syndrome and we asked to have some blood samples taken and tested – the results came back positive for Fragile X Syndrome.” Fragile X Syndrome, the most common known cause of inherited learning disabilities, can cause a wide range of difficulties with learning, as well as social, language, attention, emotional, and behavioural problems. Despite being the most common cause of inherited learning disability, Fragile X  Syndrome is actually a relatively unknown condition, with just one in 4,000 males affected and one in 6,000 females affected.

Craig said: “Following diagnosis, we were referred to a genetics counsellor but, in all honesty, while it was devastating news, it actually provided an explanation as to why the boys were the way they were – we already had support in place in terms of their primary school education, and they were in a split placement, spending mornings in Langlee Learning Support Unit in Galashiels and afternoons back at their mainstream school in – Priorsford Primary School in Peebles - where they received extra support.

“In addition, as part of the diagnosis, it was confirmed that Gillian was a carrier of the Fragile X gene. Given the genetic nature of Fragile X Syndrome, there is a risk that other family members will be impacted in some way.” Craig and Gillian were offered some support but it was mainly through the Fragile X Society that they were able to source detailed information and support, including the chance to meet other families affected by Fragile X Syndrome.

Craig said: “Following diagnosis, we contacted the Fragile X Society and got lots of helpful information and support, including how to deal with some issues such as guidance around claiming disability allowances and, probably most importantly, helping us to meet up with other families impacted by Fragile X Syndrome.

“It is genuinely encouraging to find out what other families are doing, and how their children and young adults are coping in daily life. It is very encouraging to hear how they manage post-school in terms of further education, work and relationships, and also to know that we are not alone.” Craig and Gillian also started to attend Fragile X Society conferences, which are held in Stirling, Birmingham and London each year.

A few years ago, the Society was looking for new Board members and Craig decided that given his role in the Lloyds Banking Group, it was something he could contribute towards. He is now deputy chairman of the Fragile X Society.

Stuart and Matthew are in their fourth year at Peebles High School, which has a learning support unit. The 16-year-olds spend a large part of their day there, and the rest in mainstream classes, where they receive virtually full-time support.

“Stuart and Matthew are generally very friendly lads who get on well with peers at school many of whom have, of course, known them for several years and just accept them for the way that they are, and always look out for and support them, which is really good to know,” said Craig. “They are the best of friends themselves and are typically very helpful and caring individuals. They can often get very excited or agitated if something changes in their daily life, or routine, and can talk excessively and repetitively. They don’t really like enclosed spaces or large crowds with lots of noise so, as much as they love watching football and rugby on the TV, the prospect of taking them to a match is a real challenge. “However, they have been involved with the local Scout group since they started as Beavers, moving up through Cubs, Scouts and are now at Explorers - they are well looked after by the leaders and have attended camps, gained many badges and learned some real life skills and experiences which will stand them in good stead for the future.

“They also attend a local youth club in Peebles (through Interest Link Borders). I would say we are very lucky where we live as it’s a relatively small town where the boys are fairly well known in the community. They are popular among people both young and old who have known them for many years and we consider them to be very safe here.” Craig and Gillian hope their boys will go on to lead as independent and ‘normal’ a life as possible.   “Gillian and I will continue to support Stuart and Matthew in maximising their potential,” said Craig.

“Both boys have ambitions to work, get a flat, live with a girlfriend, go to the pub, learn to drive and do everything that typically other young people would do. From a parent’s perspective, we need to help them balance that ambition with some sense of reality depending on what might or might not be possible or safe. We certainly would not prevent them from doing anything if they are possible though.

“We decided to extend our house a few years ago to make it fit for purpose should we end up with four adults living in it.

“Our biggest hope, however, is that we can sell it in years to come and buy something smaller – it would give us no greater pleasure than to have a for sale sign outside our house in the future as that would effectively mean that the boys had left home and were living independently to some extent. All we want is for them to live as normal and typical life as possible.” * The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At the time, there were no facilities to support and inform families about any aspect of Fragile X Syndrome.