Awareness Days

Mya is a bright, joyful 13-year-old whose presence lights up any room. Though she uses a wheelchair, communicates non-verbally and is fed through a g-tube, these details are only part of her story. What truly defines Mya is her love for music, her quirky sense of humour and the way she connects deeply with the people around her. Whether it’s the beat of an Imagine Dragons song, a silly moment with her brother Nicholas or receiving a compliment that makes her smile, Mya’s joy is unmistakable and contagious.

Mya lives in Durham Region with her parents, Karen and Matt, her fun-loving 11-year-old brother Nicholas and their beloved dog and cat. She’s an easygoing, joyful soul who finds comfort in music, stories and connection. When things get tough, all it takes is a song or a silly moment with her brother to bring out her signature laugh, often laced with a sharp sense of sarcasm that only those closest to her can truly appreciate. “She loves people, music and being read to. We know when she wants something even without words. She makes it clear to us through her vocalizations and facial expressions,” says Karen. 

At 15 months old, Mya was diagnosed with Rett Syndrome, a rare genetic disorder that primarily affects girls and impacts nearly every aspect of development. Children with Rett Syndrome are often born without any apparent concerns, only to start losing acquired skills such as speech, movement and even the ability to functionally use their hands as they grow older. As they age, the loss of skills stabilizes, but they do not gain any extra skills. In Mya’s case, her development plateaued around six months. She had learned to sit up but then lost the ability. Karen, trusting her instincts, pushed for answers early. Her paediatrician acted fast and referred her to SickKids for genetic testing.  

“A lot of kids with Rett [Syndrome] are first diagnosed with autism,” Karen explains, “but our doctor saw it right away.” Diagnosed with Rett Syndrome at just 15 months old, Mya began losing developmental skills, such as sitting up and self-feeding. She does not walk, feed orally, speak or have purposeful use of her hands. She has seizures, is g-tube fed and communicates primarily through a computer that tracks her eye movements. Though physically limited, her personality shines through in unexpected ways, from cheeky jokes via her eye-gaze device to a mischievous smile when her brother gets in trouble. “She uses her communication computer to ‘mess’ with people,” Karen laughs. “She’ll repeatedly say ‘all done’ during therapy, just to get a reaction, then giggles about it. That’s her sense of humour.”  

Mya’s condition includes apraxia, a frustrating disconnect between her brain’s commands and her body’s ability to respond. Whether it’s using her eyes to choose a word or reaching toward a toy, it takes an incredible amount of effort. Yet she tries every single day. “She’s trapped in her body, but she’s fully there. You can see her fighting to connect thought and action,” Karen says. 

Despite these challenges, Mya thrives with the proper support. She is fully present, deeply expressive and surrounded by a family that advocates fiercely for her happiness and quality of life. She attends a regular school every day, takes the bus and is known for her love of socializing. Her home has been modified to meet her needs with a bedroom and accessible bathroom on the main floor, complete with a lift. Music remains her greatest comfort. When she’s agitated or tired, the family turns on her favourite songs to calm and soothe her.  

Within a month of her diagnosis, Mya’s family was connected to a team of specialists at Grandview Kids. From physiotherapy and occupational therapy to feeding consultations and a Botox® clinic, Grandview Kids has helped her and her family navigate each new stage of care. Today, Grandview Kids provides Mya with School-Based Rehabilitation (SBR), helping her stay mobile and comfortable both at school and home through the provision of appropriate equipment and modifications to help her live the fullest life possible.   

“Any question about therapy, equipment or funding, Grandview is the first place we go,” shares Karen. “They’ve been exceptional, accommodating and so good with Mya.” 

In the early days, Karen also found comfort in a Grandview Kids , where she connected with other moms navigating similar challenges. “Talking to people who got it, who were going through it too, was invaluable. I learned so much about what to expect, how to advocate and what to ask for at school. It helped me emotionally, too.” 

If Karen could go back to that first heartbreaking day when the diagnosis was confirmed, she’d offer herself a message of hope. 

“I’d tell myself: It’s not going to be easy, but it’s not as bad as you think. Your daughter will be happy. Her life will be good. Different – but good. You can do this.” 

Mya is now facing major surgeries to stabilize her spine and hips, common among girls with Rett Syndrome due to scoliosis and muscle atrophy. The family is preparing for the challenges ahead, but they’re grounded by the joy Mya brings into their lives every day. 

“She’s content, comfortable and knows that she’s loved,” Karen says. “You still worry, of course, but when you see her smiling, it’s hard to feel devastated. We’re lucky in so many ways.” 

Rett Syndrome affects approximately 1 in every 10,000 female births. Though there is no cure, promising gene therapies and new treatments are on the horizon. Families like Mya’s continue to push for research, resources and better care coordination. In the meantime, the support of organizations like Grandview Kids ensures that children with Rett Syndrome are not just surviving, but living joyful, meaningful lives. 

Suhana’s story

At first glance, Suhana is like any other vibrant 15-year-old in Grade 10. She laughs during movie nights with her family, creates paintings that reflect her inner world, dances to the rhythms of Indian classical music, expresses herself through piano playing and is preparing to become a certified lifeguard. 

However, Suhana’s story did not begin easily. Born 7 weeks early and weighing just 3 lbs. 2 oz., her parents watched over her tiny frame in the neonatal intensive care unit (NICU) with both love and uncertainty. At 4 months old, they noticed something was not quite right – her right arm was not moving, and her leg seemed unresponsive. A long journey began, starting with a referral from a caring paediatrician at Centenary Hospital, leading them to Grandview Kids, where Suhana would eventually receive a life-changing diagnosis of hemiplegic cerebral palsy (CP). An MRI later revealed that both sides of her brain were affected, so her CP condition was likely bilateral from birth. 

The early years were the hardest as Suhana could not use her right arm at all. She walked at an angle, her body constantly adjusting to a world that was not built for the way she moved. Speech, occupational and physiotherapy became a full-time commitment, sometimes three to four times a week. To encourage movement in her right hand, they had to cast her left arm for nearly 14 weeks. Even now, her right hand still curls, but she has learned to work with it. 

She faced physical hurdles, from toe-lifting struggles to leg length discrepancies, scoliosis and enduring pain from overcompensating posture; but the social ones were just as difficult. In elementary school, she wore an ankle-foot orthotic (AFO) on her right leg. What was meant to improve Suhana’s walking ability also became a social barrier as it was visible, making her “different” from her peers. Climbing stairs was difficult, causing fatigue, so she required the use of her school’s elevators. For some, that was reason enough to treat her difference as undesirable and problematic. Acceptance was not easy. Even teachers sometimes failed to listen or understand. Suhana and her family did not back down and continued to advocate, educate and push for awareness. 

As the years passed, Suhana’s management of her daily tasks and the social struggles eased, although not completely, but enough to see change. More students with diverse needs entered the school system. Slowly, things started to shift. High school, by contrast, has been a more inclusive and understanding place. Suhana now uses assistive technology, such as voice-to-text, receives accessible modifications at school and at home, and participates in pool therapy, yoga, and group strengthening sessions. She has also learned to tie her shoelaces, use scissors with adaptive grips and express herself with power and poise. 

Perhaps most meaningful to Suhana is the Youth Advisory Council (YAC) at Grandview Kids. This is where Suhana discovered that she had a story that mattered and a voice to be heard. As a YAC member, she volunteers and works to make life better for kids like her and connects with other youth and graduates who understand the complexities of having a disability, like CP. 

Living with CP does not define Suhana, but it is part of her journey. She has off days when her legs hurt, and tripping or falling is still a risk she faces. She still battles fatigue and a posture that tries to pull her to the right, but she faces it all with unwavering determination. Suhana has become an artist, a dancer, a future lifeguard, a leader and most importantly, an advocate for inclusion. Suhana’s journey is far from over, but already, she is inspiring change. She reminds us that awareness is not just about understanding what CP is, it is also about creating a world that makes space for all bodies, all abilities and all kinds of strength. 

Celebrating Invisible Disabilities Week: October 19-25 

Every October, Invisible Disabilities Week shines a light on the millions of individuals living with challenges that cannot always be seen but are deeply felt. For Erika and her son, Kaleb, this week is more than just a time for awareness. It is their life, daily journey and call to action for compassion and understanding. 

8-year-old Kaleb is brilliant with numbers, builds flags by hand and is a video game whiz – especially when it comes to Super Mario Brothers. He is a proud big brother to 1.5-year-old Tatum and is always ready to throw out diapers, lend a helping hand and make his baby brother laugh. He’s headstrong, full of heart and never afraid to speak his mind. 

What many do not see when they look at Kaleb is that he lives with several invisible disabilities. Diagnosed with autism spectrum disorder (ASD) at age 2, attention deficit hyperactivity disorder (ADHD) at 4, oppositional defiant disorder (ODD) at 6 and more recently with obsessive compulsive disorder (OCD) and post-traumatic stress disorder (PTSD), Kaleb’s story is layered and complex. From the outside, it might be easy to miss, but for those closest to him, every day brings challenges and victories that cannot be measured by appearance alone. 

Signs of Kaleb’s neurodivergence began early. By six months, Erika noticed tantrums and delays in meeting developmental milestones. Though he began speaking early, he became non-verbal around age 2 and remained so until he was 4. Thanks to a quick diagnosis and services from Grandview Kids, Kaleb began to receive early interventions, services that Erika credits with changing his path entirely. 

Kaleb’s family has been his greatest source of strength. He lives with grandparents, Papa Kevin and Nana Linda. Nana was there when Kaleb was born and even cut his umbilical cord. She continues to attend every appointment and advocate fiercely for her grandson. Papa works full-time but took the time to build a sensory room at home to support Kaleb’s needs. Even Kaleb’s uncle Dylan, a member of the Canadian Armed Forces stationed in Kingston but who lives in Napanee, never hesitates to take time off work to drive him to appointments at SickKids Hospital in Toronto. This tight-knit family team, which also includes his aunt Ashley, cousin Penelope, and baby Tatum, keeps Kaleb supported, grounded, and loved. 

Living with invisible disabilities brings daily challenges that aren’t always understood by the outside world. Kaleb experiences aggressive outbursts, sensory overloads and overwhelming emotions, many of which stem from trauma, including past abuse. Despite the outward calm that may be seen, there are storms he’s constantly weathering beneath the surface. “People in public sometimes judge us when Kaleb has a meltdown,” Erika says. “But what they don’t realize is that he’s not ‘being bad’ – he’s overwhelmed. He’s feeling everything all at once.” 

Erika’s own journey has been one of learning, unlearning and growing. “I used to be quick to judge other parents and kids, but Kaleb taught me so much. Now I see every child differently. I realize that not every challenge is visible, and not every meltdown means a child is misbehaving.” 

Through Grandview Kids, Kaleb has accessed a wide range of essential services: speech and occupational therapy, physiotherapy, social work, ABA, recreational therapy and participation in the Extensive Needs Services (ENS) Program during their most trying time. Therapeutic recreation outings serviced through ENS gave both Kaleb and his mom much-needed breaks, while social work services supported Erika and Nana Linda as caregivers. “ENS and his entire team at Grandview Kids were incredible,” Erika shares. “They even visited him while he was admitted to the hospital. They fought for him, for our family. I cried when he was discharged from ENS because they had become like family.” 

Kaleb now also receives care through Kinark and private Applied Behaviour Analysis (ABA) therapy. Slowly but surely, he is finding his footing, with increased time at school, upcoming speech therapy and stronger communication skills. Most importantly, he is surrounded by people who believe in him. 

Invisible Disabilities Week reminds us to look beyond what is visible and to lead with compassion. For Erika, it is also about encouraging understanding from others. “I wish people would ask before judging. Ask questions instead of being quick to judge. Even just saying, ‘Can I help you?’ can mean everything. We’re not always looking for answers, just kindness.” 

She continues, “I am scared sometimes for Kaleb’s future, for how the community at large might let him down. But I have a good feeling about his future. He’s so smart and has a great support system with his family and his care team. I know he can have a bright future.” 

Kaleb’s story is a powerful reminder that invisible does not mean insignificant. Behind the smiles, tantrums, quiet moments and the loud ones, there is a child who is learning to thrive in a world that does not always understand him. Behind that child, there is also a village that sees the unseen and never stops fighting for better.