Life or death at 11 years old

Today is National Siblings Day. This is a moving and illuminating piece from Jamie Trossman, 12 (right), about a time a year ago when her brother Jacob, 14 (centre), went into respiratory distress. Jamie’s twin sister Sierra is on the left. By Jamie Trossman I was sitting at the kitchen table, reviewing my homework, when […]

I Am Not Alone

Children like my son are at risk and nobody is willing to help. We need change immediately, lives are literally at stake. Young, innocent and fragile lives. In the midst of caring for my severely disabled teenager, I thought I was the only one struggling with incompetent nursing care at home. I didn’t realize that […]

Lack of Accountability in the Healthcare System

I spoke out about the lack of accountability in the healthcare system in Ontario and got burned. According to the Community Care Access Centre (CCAC) in Ontario, I have “the right to express concerns and recommend changes without fear of reprisals, interference, coercion or discrimination”. That is a lie. When my 14 year old son, […]

Before and After

  In my mind, my life as a mom is divided into two: before and after. The “before” is prior to Jacob getting sick and spending 236 days in the hospital. The “after” began when he was discharged from the hospital and my life, and that of my family, changed dramatically. In reality, the change […]

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 […]