'My baby risks dying every time he falls asleep'

Fifteen-month-old Casper has a rare condition that means bedtime could kill him. Mum Stephanie Roberts, 33, is determined to find a cure

- LESLEY JONES

Bedtime with a toddler and a baby is always going to be hectic, but for our family, it’s also a matter of life or death. After getting my boys into their pyjamas and reading them a story, I usually have to battle to get Max, three, settled before going into his baby brother Casper’s room to get him down for the night.

The doorbell rings as I try to soothe him, as it has done every night since we brought Casper home from the hospital. The nurse who’s arrived will watch him closely all night, but first we have to strap a breathing mask to his face and an alarmed oxygen monitor to his tiny foot.

Without this help, falling asleep could kill my baby. With his ultra-rare condition, Casper’s little body forgets to breathe and so he’s kept alive by a ventilator.

My pregnancy and Casper’s birth had been stress-free. “We’ll certainly have our hands full with two children under two,” I told my partner James, 33. If only a normal, chaotic family life was all we had to worry about.

Looking at our newborn son tucked up beside my hospital bed, we expected to take him home next morning. In reality, it would be almost 10 months before that day came. As we prepared to leave, nurses noticed Casper was a little cold as they did their routine checks. Then one of them said suddenly, “He doesn’t look right,” and we could see he wasn’t breathing the way he should and was floppy. She quickly took him to get checked but, reassured by the staff, we weren't overly worried.

Within five minutes, all that changed. Casper had been intubated and they believed he was in respiratory distress-in fact, he wasn't breathing at all. James and I were stunned, trying to process this information.