Job 1: 'Making sure that people see Jacob as a person'

Our new A Family Like Mine video is here!

***Update: This video was filmed two weeks before coronavirus isolation in Toronto took hold. Here's an update on the family from Marcy: 

"We are house-bound. Only leaving to walk around the neighbourhood. Not going into any grocery stores or drug stores. Needing to rely on friends who we know have been isolated to shop for us. Can’t rely on grocery store pick up service because we don’t know who did the shopping. No visitors.

Our nursing agency won't supply masks, even though our nurses do frequent deep suctioning, and our own supply is limited. Lysol wipes and distilled water for Jacob's BiPap are in short supply. We cancelled all nurses and personal support workers who work in retirement or nursing homes. One bathroom is dedicated to family, our nurses have a separate bathroom. Constantly disinfecting common areas and things such as doorknobs and light switches."

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Meet Marcy White and Andrew Trossman, and their three kids: Jacob, 17, and twin sisters Sierra and Jamie, 15.

Jacob has a neurodegenerative disease and needs 24-hour nursing care to keep him breathing. He doesn’t speak and can’t move his body, but he “understands everything,” Marcy says, and communicates through eye blinks.

Jacob goes to a regular high school and loves movies and being out and about in Toronto. But the supports that allow him to live at home “are very, very thin,” Marcy says, and battles to get Jacob what he needs take a toll on the whole family. In this video, they talk about their struggles to make health professionals see Jacob as a person.

A Family Like Mine is a video series about diverse families raising children with disabilities, produced by BLOOM, a blog on parenting kids with disabilities from Holland Bloorview Kids Rehabilitation Hospital. Check out our playlist of 10 videos.