Coronavirus: Young Canadians with rare diseases feeling impact of pandemic

“It’s bittersweet because he’s taking a big brother role, even though he’s the little brother,” said Terri Gortnar, the children’s mother.

Claire Gortnar, who is about to turn six, does not respond to Josef as he pushes her on the swings, but she is smiling and appears to be enjoying it.

She is one of around 15 Canadians with CL2 Batten Disease, an inherited nervous system disorder. No specific treatment is available to cure it, but treatments exist to manage the symptoms.