Family thanks Holland Bloorview with new acknowledgement program
When thinking about how to best express their gratitude for the many Holland Bloorview team members who have helped their son Jacob (Jake) Trossman over the years, Marcy White and Andrew Trossman had an aha moment –let’s create an award. People close to Marcy and Andrew know that when they decide to do something --they make it happen (especially if their goal has anything to do with their children).
The award that they referred to affectionately from the start as “Jake’s Award” came to be out of a simple and heartfelt desire to offer a big and public “thank you” to the Holland Bloorview community.
The inaugural nomination period will run until May 17. For more information about Jake’s Award for Amazing Health Care Providers, including eligibility, please click here.
We wanted to learn more about Jake and understand what moved his family to create this award. What better way, we thought, than to interview Marcy White, Jacob Trossman’s mother.
How would you describe Jake?
“Jacob has been through so many challenges in his life. Things we take for granted, like walking, eating and breathing, are either impossible or extremely difficult for him. But despite his limitations, he is generally a happy young man. He gets joy from simple things, like a joke, a funny sound or someone taking the time to interact with him.”
What are Jakes favourite things to do?
“Jacob really enjoys being included in conversations, which sounds odd since he is non-verbal. But he understands so much and loves interacting with people, especially kids around his own age. With the pandemic, his interactions have been severely limited to family and a few caregivers.”
What is your most memorable experience at Holland Bloorview?
“When Jacob was younger, we used to have Snoezelen room sessions with him and his younger twin sisters. It was a great way for us to spend time together - Jake loved the fiber optic lights, bubble tube and the vibrating mat. His sisters loved pressing all the buttons needed to change the colours, sounds and motions. But the best time Jake spent at HB was in the pool, he loved both the regular swimming pool as well as the Snoezelen pool. He swam there frequently (often twice a week) for many, many years. One year, a lifeguard was also a film student at Ryerson and created this movie about Jacob in the water.”
How would you describe Pelizaeus-Merzbacher disease (PMD) to someone who isn’t familiar with it?
“PMD is a neurodegenerative disorder that impairs the body's ability to form proper myelin (the material that coats all the nerves in our body). There is a range of severity - those with a milder form of the disease may have trouble walking and those with a more severe form may have trouble breathing and cannot move independently. Unfortunately Jacob has the most severe, or connatal, form of PMD.”
When did you start the CurePMD Foundation?
“In 2006 Andrew and I found a drug that was in clinical phase 1 trials for people with spinal cord injuries. The data looked promising for helping myelin formation. We brought this idea to a PMD physician and researcher in the US who we were working with and proposed a research study. We created CurePMD to raise funds for this project and other projects that followed. This TV clip from ABC's Nightline explains what we did with the research (and shows how much Jake adores Andrea Bocelli).”
How would you describe the care you received at Holland Bloorview?
“Outstanding. I cannot recall a single time where we had a less-than-great experience. And for anyone who knows me and the advocacy I've undertaken over the years will know that I would not say it if I didn't mean it.”
What is it about Holland Bloorview that made you decide you wanted to share this endowment fund for outstanding health care providers?
“As Jacob grew up, our focus shifted away from research as it became clear that we were unlikely to discover a treatment that would cure PMD for Jacob. Around the same time, his symptoms worsened and his care became more intense. When he was 12 years old he spent 236 days in the hospital, including several lengthy ICU stays. We began to focus on the care Jacob required, and finding consistent and competent care for him became an enormous challenge. We have so many real-life examples of how bad and even mediocre care increases problems and stress for the whole family but outstanding care lightens the pressure a little bit and is so appreciated.”
What have you learned about the health care system over the years?
“I have learned so many things about the health care system! The recurrent theme is that it is not created for people like Jacob. The needs of people with severe disabilities and medical fragility are not accommodated safely in our province. It is well recognized that this population is not well-supported, yet nobody is willing to do the hard work of fixing the problems. It seems to always be someone else's responsibility.”
What does it mean to be client and family centered?
“To me it means recognizing that the client and family have an equal seat at the table. Medical professionals have their experience and knowledge, but so do families. On their own, each is valuable, but together the team becomes stronger. (As long as the institution truly believes in it. It becomes very obvious when it is just a marketing slogan. HB lives this concept).”
Is there anything else you want to share about Jake or something you have learned in this journey?
“Thanks to Jacob, I have learned so much. He has definitely made me a more compassionate and patient person. Our experience has also taught me the importance of taking responsibility for your own health care, and the need to stand up and advocate for things that are needed. The reality of parenting a person with complex needs and rare disorder is that it is full of challenges and struggles. I learned to stop thinking that things happen for a reason and life is fair. They don't and it isn't.”
We’d like to thank Marcy White for helping us to get to know Jake a bit better.
To nominate an amazing health care provider today, please visit the Jake’s Award page.