'My baby is at risk of dying when he falls asleep - I’m determined to find a cure'

ok.co.uk:

When Stephanie Roberts and her partner James found out they were expecting their second child, the couple were worried about facing the ‘typical’ parenting dilemmas associated with having two children under two.

But following Casper’s birth 15 months ago, the couple’s life turned upside down when he was diagnosed with congenital central hypoventilation syndrome (CCHS).

Affecting just 1,000 people worldwide, the rare condition impacts how the autonomic nervous system manages breathing and can cause breathing to stop.

Here, 33 year old Stephanie shares Casper’s story and shines a light on the work she is doing to find a cure for CCHS… “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.