When Hilary and Robbie Pollard’s son, Caleb, wasn’t gaining weight and had trouble feeding at three months old, he was referred by his family doctor to a local pediatrician in Prince Edward Island.
The pediatrician noticed Caleb was a “floppy baby,” meaning he had poor muscle tone, which can be an indication of a serious problem. As a result, Caleb was referred to the IWK for further investigation and care.
At the IWK, Caleb underwent blood work and genetic testing.
Unfortunately, the genetic results determined that Caleb has Merosin-Deficient Congenital Dystrophy, a rare congenital neuromuscular disease. The disease causes weakness and wasting of the muscles used for movement (skeletal muscles).
Sadly, there’s not yet a cure for Merosin-Deficient Congenital Dystrophy.
Because Caleb’s muscles are weak, he requires a wheelchair to get around. He also uses a cough assist device to help clear mucus from his lungs and is fed through a G-tube (a feeding tube). He also visits the IWK’s Rehab Clinic every six months for regular assessments of his abilities.
In 2022, Caleb became a big brother to Ryker – Hilary and Robbie’s second child. Like Caleb, Ryker wasn’t gaining weight and underwent genetic testing to confirm what his parents had already suspected – Ryker, too, has Merosin-Deficient Congenital Dystrophy.
“We chose to stay positive and give the boys the best life they can,” shares Hilary on hearing the news.
Ryker also uses a G-tube to get the nutrients he needs to grow, and a cough assist device to help clear mucus from his lungs.
“Caleb and Ryker are the happiest boys you’ll ever meet,” says Hilary. “Music is Caleb’s life. If there’s music on, he’s happy. He sings and dances all day. Ryker is always dancing and talking,” she adds.
For the Pollard family, the IWK means everything to them and helps their sons have a better quality of life. Both boys will continue to visit many clinics at the IWK throughout their childhoods, including Eye Care, Feeding, Rehab and Respirology.
