“All I kept thinking was ‘is my son going to die when he is 11?’.” Sharon Byrne remembers the fear she felt when she heard her son’s diagnosis of a rare degenerative genetic disorder when he was just two years old.
Sharon, who lives in Lucan, Co Dublin, said Karl (Swaine), who was her first child, was born a “perfectly healthy baby” on April 2nd, 2007.
“We had no concerns – he was hitting all his milestones and everything was fine,” she said.
“Then, in February 2009, I was changing his nappy one night and noticed his belly button stuck out.”
Concerned it could be a hernia, Sharon and her partner, Howard Swaine, brought their son to Tallaght Hospital to have him examined.