Maddy’s Story: Ehlers-Danlos Syndrome Awareness Month

18-year-old Maddy is a vibrant and passionate young woman who pours her heart into the people and pursuits she loves. Whether spending quality time with her parents, younger brother or close friends, Maddy thrives on connection. She is a creative crafter, an adaptive para-rock climber and has been a dedicated dancer since the age of two. 

Recently, Maddy completed her first year at Carleton University, where she studies cognitive science and neuroscience with the goal of becoming a paediatric Occupational Therapist. Her journey has been shaped by both passion and perseverance. She was diagnosed at 14 with Ehlers-Danlos Syndrome (EDS), a progressive and life-changing genetic condition that reshaped her life and worldview. 

Grandview Kids has played a vital role in Maddy’s life from the beginning. As an infant, she was referred for hearing assessments and physiotherapy to address torticollis. As she grew, Maddy showed signs of joint hypermobility, frequent bruising and unexplained injuries. It wasn’t until age 13, when her symptoms dramatically worsened, that her family knew something more serious was happening. Persistent digestive issues, dizzy and fainting spells, low blood pressure and severe spine and body pain that impaired her ability to walk led them to SickKids Hospital. 

At 14, Maddy was diagnosed with EDS, an inherited disorder that affects connective tissues. Her family soon discovered that her mother, grandmother and cousin also had EDS, though Maddy’s case was more severe. The condition causes joint hypermobility, skin elasticity, chronic pain and severe digestive challenges. She now uses a combination of mobility aids, including a wheelchair, walker and forearm crutches. Due to gastrointestinal complications, she suffered dysmotility (muscles and/or nerves of the digestive system not working appropriately), and she now relies on a gastrojejunostomy (GJ) tube for the majority of her nutrition. Though she can eat small amounts of food, most nourishment is delivered and drained through the tube. 

To manage pain and reduce joint dislocations, Maddy wears knee-ankle-foot orthoses (KAFOs), braces on her thumb and uses therapeutic taping on her knees and shoulders. Despite the difficulties, she remains incredibly resilient. 

Following her diagnosis, Grandview Kids provided Maddy with comprehensive therapy services, medical care–including dietetic and feeding clinic support–and access to social work. Physiotherapy helped manage her pain, gait and endurance challenges, while her therapy team helped secure accessible modifications at home and school. They also guided her through the process of choosing the right wheelchair to navigate her university campus independently. 

Social work services played a crucial role in helping Maddy finish high school, especially during periods of illness and hospitalization. The team supported her in navigating the administrative and emotional challenges that came with chronic illness, enabling her to transition successfully into university life. 

High school was a difficult time marked by frequent hospital stays, missed classes, self-learning and the loss of social experiences like dances and other milestones. Returning to school with visible medical devices and mobility aids brought a painful new reality: many peers misunderstood her condition, and some even accused her of “faking” it. This misunderstanding and stigma led to intense anxiety and feelings of isolation. 

Fortunately, Maddy’s school dance program friends remained a source of strength and encouragement. They stood by her side as she relearned how to dance, supported by mobility aids. Though she could no longer jump or spin without her crutches or wheelchair, Maddy’s passion didn’t waver. Her peers learned how to help her navigate the stage and adapt choreography, embracing her as the powerful performer she has always been. 

Maddy continues to pursue dance professionally in Toronto and remains active in her university’s dance community. Her journey with EDS has taught her to believe in herself and to rise above the skepticism of others. She shares this message with fellow youth living with exceptionalities: 

“Be confident in yourself and experience life – even if it looks a little different.”