You may not have heard of 18 year-old Jacob Trossman, but once you listen to his giggle, chances are, you won't soon forget him.
“His laugh is so infectious, it’s like a high pitched squeal of joy,” says his mom, Marcy. “It just makes me smile every time.” (Read to the end to find out how we are all going to help make Jacob smile today :).
Jacob was born with Pelizaeus-Merzbacher disease (PMD), a rare, progressive, degenerative disorder of the central nervous system, that affects breathing, motor ability and cognitive function. He is not able to eat, breathe or move on his own and needs 24/7 nursing care.
“The second he was born, the nurses quickly whisked him to the resuscitation room, which was really the first place I saw him,” Marcy remembers.
After three months in intensive care at The Hospital for Sick Children, Jacob came home and Marcy became a full-time mom, nurse, and advocate for Jacob. She and her husband Andrew did their best to navigate their new reality.
“I had planned on just taking a three-month maternity leave and heading right back to my career in the investment industry,” says Marcy, adding, “Sometimes life has other plans.”
Twin daughters followed a couple of years later and Marcy and Andrew juggled parenting duties with Jacob’s persistent health challenges, hoping to give him as normal a life as possible, including attending school, summer camp, and celebrating his Bar Mitzvah at age 13.
“Jacob was in the middle of 236-day hospital stay at the time, we didn’t even know if he’d make it to his ceremony,” says Marcy. “But this kid likes to party! He rises to the occasion every single time. The fact that he slept for a week after was worth it,” she smiles.
Marcy writes about Jacob’s story in her beautiful and heart-wrenching memoir, ‘The Boy Who Can.’ You can find out more about his story and purchase the book here.
“I think when people say, ‘All I want is for my kids to be healthy and happy,’ it takes on a whole new meaning when you’re talking about a child with special needs,” says Marcy. “All I want is for Jacob is to be healthy and happy, and I’ll do anything to make that happen.”
Despite his challenges, Jacob has always found ways to express himself. "When he’s upset he’ll scream or cry. When he’s happy, he laughs,” says Marcy. “Back in Kindergarten, when the teachers would talk to each other and he would overhear, he’d start laughing appropriately when they did. We knew early on that there was a smart little kid in there.”
Sadly though, Marcy finds that most people tend to avoid interaction with Jacob, or even ignore him. This, more than anything, truly frustrates her.
“I wish people would see Jacob as a person first, not as a wheelchair. I wish they would say Hi to him, and not to the adult that he’s with. I wish they would ask him how he is, what he likes to do,” says Marcy. “He’s not scary, he’s just like you. He has the same kind of feelings that you do. He just wants to be around people, he wants friends.”
The pandemic restrictions have made life even more isolating for Jacob.
“It just completely shut it off,” says Marcy. “He used to go to school, swimming, he’d go for walks, to the Zoo. Since Covid started, we really can’t go very far from our house.”
Laughter doesn’t come easily to Jacob these days, but that’s where YOU all come in!
“Jacob loves jokes and stories. He loves the shows ‘Friends’ and ‘The Simpsons,’ and always cracks up during the worst auditions on ‘American Idol.’ He LOVES his dog, Felix. He’s also really into his iPad and Netflix. He would probably like Tik Tok if he was able to use it,” says Marcy.
So, YOUR CHALLENGE today is to give Jacob a reason to smile. We’re asking each of you to send Jacob a funny video, by posting it on Instagram and tagging @50daysofkindness and #MakeJacobLaugh! We’ll re-post it on our story. You can also DM us and we’ll happily post it for you. Here are some ideas, to post:
-a funny dog or cat video
-a clip from one of Jacob’s favourite shows - ‘Friends,’ ‘The Simpsons’ or ‘American Idol’
-a video of yourself telling Jacob a joke or a funny story
Let’s all try to give Jacob one day of non-stop laughter!
Resources - Learn how to be kinder to people living with disabilities
1) Watch this beautiful & powerful video featuring Jacob's family, by @HollandBloorview
2) Etiquette: Interacting with People with Disabilities - Respectability.org https://www.respectability.org/inclusion-toolkits/etiquette-interacting-with-people-with-disabilities/
3) TED Talks on Disability: @ted https://www.ted.com/topics/disability
4) How to Talk to a Person with Disabilities Without Sounding Like An A-Hole: @huffpostcanada @huffpost https://www.huffpost.com/entry/disability-etiquette_n_3600181?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAANz3pWCLKn8s4lMjhKfPaMoXu4mJH14tpnEA-T0fZMb5zMc5OA0nV9sGA52RyUppBE2g-T96zyy4ZAvvYhS-3oh4lWPQ6P7m75Bbz8QRM-DDJPTyfFedR443lAmt6GEMhPuKBJrktMUaNhAZvRRJutxFqQQURtbVPeCV6ivTobxl
5) Six Ways to Teach Kids Disability Awareness: @scarymommy https://www.scarymommy.com/disability-awareness-for-kids/
6) 10 Great Books to Help You Talk to Children About Disabilities: @eastersealson https://eastersealsdfvr.wordpress.com/2017/05/30/10-great-books-to-help-you-talk-to-children-about-disabilities/