Parents have lost three children to the same condition

Emma Cummings lost her son John and two other children to a rare genetic disorder called ARC.  Pic: Ian Georgeson
Emma Cummings lost her son John and two other children to a rare genetic disorder called ARC. Pic: Ian Georgeson
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The death of a child is every parent’s worst nightmare.

For Emma and Alan Cummings from Gorebridge, it is heartbreak they have experienced three times in the space of 12 years.

BBC Alba documentary on the children's Hospice. Sadly since filming, John has passed

BBC Alba documentary on the children's Hospice. Sadly since filming, John has passed

All have been tragically lost to the same rare genetic condition which strikes at random as the couple also have four healthy children.

Their story features in a documentary about the work of the Rachel House children’s hospice in Kinross where their last child John died aged just eight months earlier this year.

Like two of his siblings before him, he had been diagnosed with ARC syndrome and died when his life had barely begun.

But the devout Christian couple say they were shielded from despair by their strong faith and hope they will one day be reunited with their children.

Emma, 35, said: “We have faith and the knowledge that we will see them again one day is the thing that keeps us going.

“We are separated from them for a short time but we will see them again. Life is short but eternity is forever.”

The couple lost their first child Michael in February 2004 at three months old, and their second child Lucy ten years later at six months old.

John’s health took a turn for the worst on the early hours of Easter Sunday and he died in the hospice a week later while the producers were editing tonight’s documentary.

“We all came up and we had a week with him,” said Emma. “He basically spent his last week getting cuddles.

“And because of [help from] the Hospice I didn’t have to think about housework or worry about the other children – all those things were taken care of.

“So we could just devote that week to John. The care he received was excellent.

“We were able to access facilities for my other children. It was good for everyone. We could all be together because we weren’t in and out of hospital.

“They were able to manage his end of life care in a way that we wouldn’t be able to do at home.”

Emma and John have four healthy children – Thomas, 4, Jude, 7 Rebekah, 11 and Noah, 9 – who have not inherited the condition.

And recalling the death of their first child, Emma said: “He would have been 13 this month. We had no clue that he was ill. There were no signs that there was anything wrong with him. It took three weeks to get a diagnosis.

“But they were all more than just a diagnosis. They were people in their own right with their own personalities. They gave us a lot of love and enriched our lives and we were also able to give them a lot of love and invest in them as people. Most people want a life that is filled with love and is as rich as it possibly can be regardless of how long or short that life is.”

Tèarmann / Home from Home will be broadcast tonight on BBC ALBA from 9pm.

Director Lindsay Goodall said: “Rachel and Robin Houses, and the families you meet there, make you think differently about life. I learned something new and inspiring every day, and that’s stayed with me. I was a bit scared of visiting the hospices for the first time, but they’re truly special places.”