School volunteer honours his daughter's memory

By Louise Kinross I first met Yoonus Mia in 2003. I’d bump into him in the hospital walking beside a child in a helmet, feet strapped onto the pedals of an adapted bike. He was a volunteer in the Bloorview school. He was also a retired elementary school teacher and principal. We talked about what’s kept him coming back to work with Bloorview students for 14 years.BLOOM: You started off with kids in the integrated education and therapy classes....

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Community keeps this volunteer coming back

By Louise Kinross After her daughter Elizabeth was diagnosed with global developmental delay, Jean Hammond immersed herself at Holland Bloorview as a family leader.The former advertising exec has co-chaired our family advisory, sat on hospital committees, helped hire staff and plan an annual recreation fair, educated medical students about what matters to families, and hosted coffee nights that give our inpatient parents a break and a sweet...

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Instead of changing her child, a mother changes herself

By Louise Kinross Superbabies Don't Cry is a brilliant essay about how the birth of a child with a chromosome deletion upended one mother's ideas about perfection and our ability to control life. It's written by Heather Kirn Lanier. She blogs about her daughter Fiona (centre above) at Star In Her Eye.  Here are some of my favourite lines. "With my woo-woo belief that the mind could control the body, I'd pushed disability away. I'd done...

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'Care for the family shouldn't stop when the child dies'

By Louise Kinross When Bruno Geremia’s son Matthew died two years ago, Bruno's sense of loss extended to the people he knew at Holland Bloorview during Matthew’s life. “When you lose your child, you also lose your care team and the community at Holland Bloorview,” says Bruno (centre, with wife Marlene right and family leader Vivian Low left). “When you walk through the door for the first time after, there's a sense that you don’t belong...

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Rana finds her voice in advocacy

By Rana Nasrazadani“You’re not ready for university.”A staff member said this to me in high school, in front of the whole class. These words, from a person whose job was to guide and support students, had a profound impact on me. Sometimes, they still linger.It wasn’t these words alone that affected me. Staff had discouraged me from pursuing post-secondary education throughout high school. I believe they had a limit about how far I would go. When...

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From patient to bioethicist, Dolly comes full circle

By Louise Kinross I met Dolly Menna-Dack in 1999 when we interviewed her as a youth role model in BLOOM (then called Connections). At age three, Dolly, who has juvenile rheumatoid arthritis, began coming to Holland Bloorview three days a week for therapy. From age eight to 12 she came every day for school and therapy. At 12 she spent eight months here as an inpatient following surgery. “Greg Steffler taught me to drive a stretcher, known as...

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'We can't fix what we don't know'

Kimberley Siu-Chong (centre) is Holland Bloorview’s touchpoint for feedback from families. As client- and family-relations facilitator, she collects input from children, teens and families about what we’re doing well and where we need to improve. “The Patient Declaration of Values is my bible,” Kim says. “It was developed with families and is based on the values of quality of care, partnership, respect and information sharing. When I hear...

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A child who lived in hospital turns advocate to improve care

This is a photo of Emily Chan last summer, when she participated in the Ward Summer Student Program in our research institute. Tonight she's being recognized by Ontario Premier Kathleen Wynne, MPP for Don Valley West, for her volunteer work here.   By Louise Kinross At age six, Emily Chan was the girl with shiny black hair racing through Holland Bloorview to school in an electric wheelchair adorned with pink stickers. Today, Emily’s a...

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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 someone called from the family room.“Jamie?”“Yes?”“Can you come here for a second?”“Coming.”I left my semi-finished homework...

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When getting out is twice as hard

By Sara PotI hate surprises. On my 13th birthday, my mom invited five friends over to surprise me. As soon as I saw them, I said, “Seriously?! What am I going to do with you guys?” Given my aversion to the unexpected, raising two girls who are medically fragile hasn't been easy. Two of our four daughters—Rachel, 10, and Janneke, 8—use wheelchairs and are tube-fed 24 hours a day.Taking Rachel and Janneke out requires tremendous effort. Sometimes...

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