Focus of awareness: the Bryce family, left, and the McDonalds.

“Following the publication, we had a number of calls from families,” said Foundation chairman, Alan Peaford. “One family had been in touch when their child was a baby, but lost contact. He is now 15, and doing well. From another call we heard about four CdLS youngsters at one school in central Scotland.”

In the article, written by Natasha Weale, Michael and Grant’s parents explained the problems of CdLS and also shared some of the emotional problems that all families face.

Sonia McDonald said: “Throughout my pregnancy I must have had four or five scans, none of which showed up Michael’s condition. Only the day before I went into labour doctors revealed he didn’t have any arms. Besides that, they didn’t know what else was wrong with him.”

“Our world fell apart,” Mike McDonald told the Mail. “It took all the enjoyment out of having Michael and, even now, I’m still angry and hurt. I feel we were let down very badly.”

Shock

Lisa Bryce and her husband, Alan, were informed Grant had CdLS five days after he was born. It came as a total shock.

Lisa said: “Before Grant was born, we were told that there was a chance he could have Edwards Syndrome, which also meant that he would have major physical abnormalities.

“We had extensive scans and tests, but they all came back negative and we were told we would have a healthy baby.”

They later found out that doctors would not have been able to diagnose CdLS before Grant’s birth as there is still no conclusive test.

It took both couples a long time to accept their situations.

For Sonia and Mike, the last seven years have proved the toughest of their lives.

As well as coming to terms with Michael’s disabilities and providing 24-hour care, they have had to overcome the cruellest of prejudices.

Sonia said: “The thing with Michael is that his personality more than makes up for his disability... but a lot of people can’t, or won’t, see that. I remember one time while I was out shopping with Michael and this old couple came up to me and said: ‘People like you shouldn’t bring people like that out.’

“Another time, on holiday, a little boy asked his dad why Michael didn’t have any arms.

“The dad’s response was unbelievable. He said that it must have been because Michael’s mummy took something while she was pregnant. I couldn’t believe what I was hearing because that’s the last thing I would have done.

Ignorant

“Hearing that type of thing never gets easier. I just wish people didn’t have to be so ignorant.”

Lisa and Alan have not had to contend with hurtful jibes about their son, but they’re the first to admit that Grant’s condition has tested their relationship.

Alan said: “I think when we first found out about Grant we were in denial. We didn’t know what we were going to be up against and, to a certain extent, that’s still the case.

“I think that’s why we don’t tend to look to the future too much. When you do, that’s when it gets scary. Life’s certainly not the same as it was.”