Lana and Mark are the proud and loving parents of Kaysen, aged 2 and a half. Kaysen's family first noticed signs of SMA when Kaysen was 4 months old and he was eventually diagnosed with SMA Type 1 at 8 months old.
Since the initial upheaval of the diagnosis, Lana and Mark have learned how to find a balance that works for them and create a supportive home for Kaysen and his step-brother. Between therapy and appointments, life with a child with SMA can often feel like the list of things to do and places to be is never-ending, so Lana and Mark like to make sure that they always find time in the day to slow things down as a family. For them, that means spending ordinary quality time together, doing some of Kaysen's favourite things like reading, visiting the playground, and splashing around in the bath. Lana, Mark, and Kaysen are more than a family—they're a team.
Ben is a high school student and young leader living with SMA Type 1. Growing up with SMA, Ben remembers spending a lot of time in and out of the hospital, but he also recalls being surrounded by the love of family and friends throughout his life. Now, Ben is finishing up high school and has been accepted to his dream university program to study political science in Ottawa.
Ben has always preferred to focus on what he has, instead of dwelling on what he doesn't. That mindset makes him virtually unstoppable. An avid traveller, Ben never turns down the opportunity for an adventure, from a kayak trip on the Muskoka Lakes to a guided visit of the beaches of Normandy in France. If there is a way for Ben to try something new and maybe educate those around him about the possibilities for people living with SMA at the same time, you can count him in.
Karli Drew is a vibrant-haired writer, activist and lame joke specialist. Her disabled perspective has given her an edge in all three. Nothing slows her down—except… well… snow, stairs and pandemics.
She's particularly passionate about disability justice, mutual aid efforts, and other forms of peer support. Her countless ambitions are driven by her wheelchair (and iced coffee). Since starting her advocacy journey, she's had the opportunity to work with the UN to highlight accessibility barriers in Canada. Still, she recognizes it's just as important for her to learn and listen as it is for her to educate others.
When she's not fighting injustices, Karli stays content with her myriad of interests. You can find her and her bold style at a concert, going on a local adventure, or happily kicking back in front of the TV. And whatever she's up to, you can bet she's surrounded by her family, friends, and/or laid-back dog.
Maude, a proud mother of two, including Jasmin, who at age six weeks was diagnosed with type 1 spinal muscular atrophy (SMA), lives with her husband and children in Victoriaville, Quebec. Learning to live with a child who has SMA is not easy. The obstacles associated with the condition that Maude overcame started at the very outset: understanding the disease, adjusting to the notion that your child's life will be different, navigating the system to find help.
Family plays an important role. Maude is part of a team that includes her husband, sister and mother-in-law, who all help in looking after Ethan, her older son, while she devotes her time to Jasmin. The team also includes other parents who live similar realities and support Maude in her journey.
Maude recognizes that her son will face challenges throughout his lifetime. However, she is confident that every time she and her family come up against an obstacle, they will be able to circumvent it. With creativity and, above all, love, she knows she can give Jasmin the best possible life.