Pandemic poses additional obstacles for people with rare diseases

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  • Global News published this video item, entitled “Pandemic poses additional obstacles for people with rare diseases” – below is their description.

    Everyone has been affected in some way by the pandemic. People who are being treated for rare, sometimes fatal diseases suffer more hardship than most, including children.

    In the backyard of their home in Horseshoe Valley, north of Barrie, Ont., smiling three-year-old Josef Gortnar is proudly pushing his big sister on the swings.

    “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.

    Caryn Lieberman has some of their stories.


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