Who I Run For – The Adventures of Team Jake

RES “You’re having strangers stay at your house?” asked my friend tentatively. “On their honeymoon?” “Well, we’ve never met,” I said, “but they aren’t strangers.” My friend was mortified. I didn’t think it was weird, and I wasn’t worried, despite the fact that our only exchanges with this couple had happened on Facebook. Kelly and […]

Leaving My Severely Disabled Son to Go on Vacation

Raising three children includes non-stop planning, organizing, supervising and worrying. And because one of my kids is severely disabled, the planning, organizing and supervising takes on a whole new meaning. And the worrying, well, that’s off the charts. Jacob, my 14 year-old son was born with a rare neurodegenerative disorder that impacts all aspects of […]

Media Attention

AM 640 Sun Reporter

The struggle for home nursing care (Toronto Sun – Front Page – Monday April 18, 2016)

By: Sue-Ann Levy Marcy White’s soon to be 14-year-old son, Jacob Trossman, can’t move or talk and relies on a feeding tube to eat. Trossman, who has suffered since birth from a rare neurological, degenerative disease similar to the one portrayed in the movie Lorenzo’s Oil, needs his airway deeply suctioned many times a day […]

Part 5: Families with issues over home nursing care in Ontario say things not getting better

By: Christina Stevens TORONTO — Weeks ago Marcy White shared her concerns with Global News about home nursing care for her son. Thirteen-year-old Jacob Trossman knows exactly what’s going on around him but a neurogenerative disorder has robbed him of his ability to move or talk, leaving him especially vulnerable when things go wrong with home nursing […]

Part 4: Ontario health minister recommits to investigating home nursing complaints

By: Christina Stevens, Global News It can be tough to watch Oula Alaoui clearing her son Yussuf’s airway. But it has to be done multiple times a day to keep him alive, so when she got funding for home nursing she was hoping to sleep through the night. “I forgot even what it feels to […]

Part 3: Dozens reach out on troubles with home nursing care

By: Christina Stevens, Global News Mairead Cavanagh is the mother of a seven-year-old boy who requires 24-hour care. A tracheostomy tube, a PICC line, a feeding tube — those are just of few of the things a nurse who works with Cavanagh’s son Maleek should be familiar with but she said the home nursing care […]

Part 2: Ontario health minister responds to families who say home nursing system failing them

By: Christina Stevens, Global News TORONTO — Ontario’s health minister says that until there is more proof, he does not believe there are systemic problems with families accessing home care nurses across the province. Samadhi Mora Severino, the mother of a three-year-old boy with cerebral palsy, said her son Kian has complex medical needs, which home […]

Part 1: ‘Do we have a nurse coming?’ Families worry shortage puts kids at risk

By: Christina Stevens, Global News Ontario families are desperate for help, saying home nursing care for their children is a good idea but not working as expected. Thirteen-year-old Jacob Trossman spent most of the last year in hospital. His family was elated when they were able to take him home, with provincial funding for 24-hour […]

It’s More Than ‘Venting’ When I Speak Up For My Special Needs Son

I was a very private person before I became a staunch advocate for my son Jacob. I would rather have had gum surgery than talk about my feelings. Things are very different now. Parenting, in general, is hard. Parenting medically fragile children and teenagers is fraught with unimaginable stresses, heart-crushing decisions and endless battles to […]