Stories
Every young person’s journey with rheumatic disease is different. These stories share the lived experiences of youth who are navigating challenges, building confidence, and finding their voice.
Through connection, support, and community, these young people are showing what’s possible — and helping others feel less alone along the way.
The Long Road to a Name: Daniela’s Lupus Story
Daniela is an 18-year-old youth living with Systemic Lupus Erythematosus. In this piece, she shares her journey to diagnosis, the realities of growing up with a chronic illness, and how her experiences have shaped her passion for advocacy and helping others navigating childhood-onset rheumatic disease.
My Life with PFAPA: Kai’s Story
We’re honoured to share a guest blog from one of our incredible youth in the community, Kai. Diagnosed with PFAPA at just seven years old, Kai faced more than most kids his age.
#WhyIRun: Emma’s Hope
My name is Emma Linsley, and I was diagnosed with Juvenile Arthritis eight years ago, when I was 16. At last year’s Saskatoon run, I had a deeply moving conversation with the mom of an adorable boy who has JA. We talked about the challenges of living with JA, and…
Navigating Morphea – Michelle’s Story
For most of my life, I’ve had Morphea. Starting as a red mark on my chin as ayoung child, it eventually turned darker and over the years, spread to areas onmy forehead, and neck. Morphea, also known as localized Scleroderma, is an auto immune disease thatcauses hardened and darkened patches…
Living with JIA – Lisa’s Journey
It started out as sharp pain in my hips which I believed to be a pulled muscle;however, it soon progressed into a severe pain and stiffness. Days passed as I usedcrutches to simply walk around, and I remember that any instance of lying downexacerbated the pain, leaving me immobilized. As…
#WhyIRun: Chase’s Story
Meet Chase, a brave and resilient 4-year-old from London, ON, who is inspiring his family, friends, and community to step up for kids affected by Juvenile Dermatomyositis (JDM)—a rare autoimmune disease that causes muscle weakness and skin rashes. This year, Chase’s family is joining Team Cassie + Friends to raise awareness and…
Growing up with JDM – Layla’s experience
My experience with the healthcare system started earlier than most. I was diagnosed with Juvenile Dermatomyositis (JDM), a rare autoimmune disease that affects the muscles and skin, and since then, the Montreal Children’s Hospital has been a constant part of my life, a place where I’ve had many appointments, treatments,…
Still Shining: Ava’s Journey with Juvenile Ankylosing Spondylitis
May is Ankylosing Spondylitis (AS) Awareness Month. Many people think of AS as a condition that affects adults, but it can begin in childhood, too. Ava’s story is a powerful reminder of the resilience of kids living with Juvenile Ankylosing Spondylitis and the importance of early diagnosis, support, and community.…
#WhyIRun: Stephanie + Tommy’s Story
Meet Stephanie, who is running with Team Cassie + Friends to raise awareness for Juvenile Arthritis for her son, Tommy! Diagnosed with oligoarticular Juvenile Idiopathic Arthritis (JIA) just after his second birthday, Tommy’s journey has been full of ups and downs.
World Lupus Day: Hunter’s Journey from Diagnosis to Mentorship and Research
This World Lupus Day, we’re honoured to share a guest blog from one of our incredible youth mentors, Hunter. Diagnosed with lupus at just nine years old, Hunter faced more than most kids his age. Now at 24, Hunter works as a research assistant at SickKids Hospital in Toronto, helping…
#WhyIRun: Meet Team Cassie + Friends Montreal!
La version française suit la version anglaise. We’re so excited that on May 25, 2025, Montréal will host its FIRST EVER Team Cassie + Friends walk/run! Read more about the amazing families that will be joining us below—and then join kids like Valerina, Beatrice, and Brooklyn by running or walking with…
#WhyIRun: Marley’s Story
Meet Marley: A Little Fighter Powering Big Change Meet Marley, a brave three-year-old at the heart of Team Cassie + Friends’ Virtual Run crew, #MarleysJointForces. This June, her family and friends are lacing up to raise awareness and funds for kids like Marley living with Juvenile Idiopathic Arthritis (JIA). Inspired by…