Interviews

At just 21 years old, Ella Wiley is already making a profound impact on the world around her. A fourth-year pre-med student at York University, majoring in Health Studies with a minor in Life Sciences in Society, Ella is determined to become a paediatric neurologist. This dream is shaped not only by her academic passions but also by her lived experience with a rare condition called Charcot-Marie-Tooth Disease (CMT).

Ella’s journey began at the age of 3, when a preschool teacher noticed she was struggling with mobility, particularly how she would carefully walk down the stairs with both feet on each step. That observation led to a referral to Grandview Kids, where Ella’s sister, Anna, was already receiving speech and occupational therapies. Though Ella started with physiotherapy and occupational therapy at Grandview Kids, it would be more than a decade before she received a diagnosis.

“I wasn’t officially diagnosed with CMT until I was 17,” Ella explains. “We were at Markham Stouffville Hospital and the paediatric doctor noticed something unusual. She told me she’d only read about CMT during her residency, but she’d never actually seen a case before.”

CMT is a rare neurological disorder that affects the peripheral nerves, which control the muscles. Ella explains that CMT affects the nerves, leading to muscle weakness, balance issues and changes in the feet and hands. It’s not life-threatening, but it influences mobility and physical endurance. For Ella, that meant ongoing mobility challenges and unexplained pain. “Growing up, everyone just thought this was the way I was. Whenever we were on long walks or vacations, my muscles and bones would shift, my feet would swell and I’d be in pain. We just planned around it,” she says.

With no cure for CMT, Ella learned to manage her symptoms. She does daily strengthening exercises using resistance bands, especially for her ankles and finds working out regularly helps maintain muscle tone. Orthotics and ankle-foot orthoses (AFOs) have also made a huge difference. “I can walk longer distances without pain now,” Ella beams. “There are different types of CMT, and I have one of the milder versions. I’ve met people who can’t walk at all and need surgeries to rotate their feet. It really puts things in perspective.”

Ella credits Grandview Kids not just for giving her the physical tools to improve her mobility, but for providing a community that understood her. “It wasn’t just about therapy – it was about feeling supported,” she says. “They taught me how to walk up and down the stairs properly and gave me more control over how I move. But the biggest impact was the environment. Grandview Kids was always welcoming, uplifting and filled with people who just ‘get it.’”

Her experience at Grandview Kids extended beyond accessing services. She returned as a sibling and former client, participating in Family Engagement Team activities and events that helped her learn to advocate for herself and others. “When you’re around people who truly understand what you’re going through, even without saying it, it gives you the strength you didn’t know you needed,” Ella shares.

Over the years, Ella has faced many physical challenges but receiving a diagnosis brought clarity and empowerment. “It gave me an actual reason for the struggles I’d faced,” she says. “Now I’m more motivated to speak up and advocate for what I need.” She also acknowledges her family’s unwavering support, especially her sister Reggie, who instinctively offers her arm when walking downhill so she can steady herself.

Outside her studies, Ella finds joy in reading, singing and playing the piano and harp. She, Reggie and Anna share a love of K-pop and attending concerts. The Wiley sisters support each other through music, laughter and life’s hills, both literal and figurative. Ella allows herself to find beauty and meaning in the things she enjoys. Reading has become an opportunity to not just immerse herself in a good plot but also discover characters that resonate and give her a strong sense of belonging. Ella illustrates that finding these characters “make me feel like I matter, that I’m worthy – and that representation truly matters.”

Now serving as a Grandview Kids Ambassador, Ella wants to be a representative for other children and youth. She offers powerful advice to other young people navigating disability and uncertainty:

“To anyone who’s living with a disability and unsure about what’s ahead: Please know that you are not alone, and your path—while it may look different—is still full of possibilities. You are capable, worthy, and deserving of joy and success.

Start by learning to advocate for yourself—what your needs are, what helps you thrive, and who your support people are. Build a community that uplifts you. Physically, do what you can to care for your body in a way that feels right for you. Mentally and emotionally, give yourself grace. It’s okay to have hard days.”

When Michelle and David welcomed their son Dante into the world in early 2022, they knew he would be extraordinary. Even in the womb, he was bursting with energy “doing cartwheels,” as Michelle affectionately puts it. Two days after birth, their world shifted as Dante was diagnosed with a cleft palate, a condition that had not been detected earlier. It is characterized by an opening or split in the roof of the mouth (palate) that occurs when the tissues do not fully join during fetal development. Cleft palate can lead to difficulties with feeding, speech and ear infections.

“It was a shock… We didn’t know what that would mean for his future.” – David, Dante’s Dad

As older parents, navigating new parenthood during a pandemic, the diagnosis brought with it fear, uncertainty and a lot of questions. They were determined to face it together. Dante had the love of his big half-sister, Heaven (27), by his side for the first three years of his life, plus the support of extended family across Ontario. This was an incredibly challenging time and with services backed up due to the pandemic, Dante did not have his palate repaired until he was 16 months old.

Dante’s energy and curiosity were obvious from the start. He loved Sesame Street, playing with Lego and Play-Doh and charmed everyone he met. Despite the challenges he faced, he has been a vibrant, joyful and social child, more outgoing than his parents ever expected.

However, by 22 months, Dante was speaking fewer than 20 words. His parents, concerned about his speech development, had already engaged private speech therapy, but still weren’t seeing the progress they hoped for. In January 2024, Michelle and David were introduced to Jerome, a Speech-Language Pathologist at Grandview Kids. “Meeting Jerome was a game-changer,” David shares. “He saw what Dante needed, and suddenly, so did we.”

Then came a major realization: Dante wasn’t hearing properly. His ear tubes had fallen out and needed to be reinserted. Once they were, everything changed. By March 2024, with improved hearing and expert speech support from Grandview Kids, Dante’s vocabulary skyrocketed. Other challenges remained as children with cleft palates often substitute certain consonants, a habit known as “backing”—saying “kuh” instead of “buh” or “puh.” Now, Jerome and the family are helping Dante re-learn how to use his voice effectively and clearly. Jerome made therapy approachable and fun. Dante now looks forward to sessions, excitedly pointing out the Grandview Kids’ Ajax headquarters, The Jerry Coughlan Building, on walks, exclaiming, “That’s where we see Jerome!”

“Not every session is perfect,” David laughs. “Some days he’s not in the mood. But other days he loves it. That’s life with a toddler.” Michelle and David didn’t expect to qualify for Grandview Kids’ support since Dante’s case was moderate. However, to their surprise, they were accepted and found the local support close to home invaluable. “We felt lucky. Grateful. Privileged, even,” David says. “Not everyone gets access to these services. And when you do, it makes all the difference.”

Their experience highlights why early intervention is critical. Speech therapy isn’t a four-week process; it’s a journey. And the earlier that journey begins, the more impactful it can be.

“It broke my heart not hearing ‘Dada’ until he was nearly two,” David shares. “But now, we hear him all the time. And it’s the sweetest sound.”

Michelle and David’s advice to other families:

Don’t wait. Trust your gut if something feels off.
Leverage every resource, make connections: doctors, networks and early childhood centres.
Advocate loudly and early for your child and others like them.
Push for funding. Write your councillor. Help make support like Grandview Kids’ available to every family.

“We’re not just helping Dante,” David says. “We’re building a better path for every kid who comes after him.”

Ayush is a bright, loving and funny 11-year-old boy with a big heart, a sharp eye for detail and a flair for both pretend and real cooking. Whether he’s stirring pasta on the stove or “running” his own kitchen with his favourite YouTube chefs, Ayush brings joy and imagination into everything he does. He is a kind helper who eagerly joins in on chores like laundry, dishes and watering the plants. He loves to spend time with his family, parents Samir and Anagha, older sister, Isha and their Labrador Retriever, Max. Together, they enjoy watching movies, going for walks and hikes, riding elevators and eating ice cream. Ayush’s story, like many of the families supported by Grandview Kids, began with challenges most parents or caregivers could never anticipate.

Ayush was born with Full Mutation Fragile X Syndrome (FMFXS), or simply put, Fragile X Syndrome, which is a rare genetic condition that affects development in many ways. As an infant, Ayush struggled with muscle tone, coordination, sensory sensitivity and early communication. He was delayed in meeting many age-appropriate developmental milestones, such as rolling over, babbling, sitting up, standing, walking and toileting. He exhibited low muscle tone, low immunity and high sensitivity to touch, loud sounds and crowds. Even as a baby, his mom Anagha sensed something wasn’t quite right. “A mother’s intuition is powerful,” she says. “Even without a diagnosis, I just knew my child needed more support.”

At the age of three, after moving from India to Canada in search of better opportunities for Ayush, he was officially diagnosed with Fragile X Syndrome. Over time, he was also diagnosed with autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), Intellectual Disability, obsessive-compulsive disorder (OCD)-type Anxiety and sleep apnea. Each label brought a mix of emotions, but mostly clarity and direction as they now knew what Ayush’s needs were.

Grandview Kids stepped in as the first agency to work alongside Ayush’s family upon their arrival to Canada. Services from speech-language pathology (SLP) to physiotherapy (PT), occupational therapy (OT) to social work, Grandview quickly became more than a service provider; it became a second home. “Ayush was lucky to have the same therapists from the start to the end of his therapy blocks,” his mom reflects. “That consistency helped him thrive.” He began SLP with fewer than 50 words in his vocabulary. With ongoing support, he has grown to use over 500 words. He showed tremendous and outstanding improvement in his fine motor skills, self-regulation, expressive and receptive speech and language skills. Ayush overcame his fear of water through Grandview Kids’ adapted swim programs, developed friendships at respite camps and took part in therapeutic recreation (TR) groups that nurtured his social and emotional growth. Each milestone was hard-earned and celebrated with his tight-knit family by his side.

Families of children with physical, communication and developmental needs understand the complex world of navigating services, resources, programs and available funding. Grandview Kids recognizes this challenge and aims to ease the burden of blindly searching for such supports, as they help families like Ayush’s fill out vital applications for Disability Tax Credit (DTC), Access2Card and Ontario Autism Program (OAP). They remain actively engaged through Family Engagement workshops and events, Facebook information groups (e.g., Online Parent Support, Transition Adolescent Parent Support and Grandview OAP) and Anagha contributes as a Family Advisory Council (FAC) member.

Ayush is now thriving in his Practical Learning Program (PLP) Junior special education classroom at school. He participates in school activities, enjoys back-and-forth conversations and continues to build independence through daily routines. His love for structure, humour and helping others are now seen as his superpowers–traits that shape not only how he experiences the world, but how he impacts it.

Still, like many families with children who have complex needs, the road ahead comes with uncertainty. As Ayush grows older, funding for therapies will decrease once he turns 18, threatening access to the very supports that helped shape his development. For Anagha, the deepest fear is the one many parents of children and youth with disabilities quietly carry: What happens when I’m not here? This lingering question drives Anagha’s planning and learning in the direction that will help Ayush be independent or need less support in the future. Even in the face of this worry, there is incredible strength. “Ayush is my biggest teacher – he is my strength,” Anagha says. “He teaches me patience, resilience and joy in the smallest things. I don’t try to change him. I change myself to support him better.”

Arthrogryposis is a lifelong condition characterized by joint contractures, most commonly affecting the arms and legs. It is often marked by stiffness and a limited range of motion. While the exact cause remains unknown, the condition is typically diagnosed in utero or at birth.

For Monjuri and her 11-year-old son Rudra, arthrogryposis is more than a diagnosis – it’s a journey of resilience, advocacy and hope. Their story is one of transformation, powered by determination and the unwavering support of Grandview Kids.

“When my son Rudra was born, his hands were on his ears, his knees were on his chest, and his foot was folded over his belly button. He looked like a flower that forgot to bloom.” – Monjuri, 2018

At her 20-week prenatal scan, Monjuri learned that Rudra had club feet. At birth, they discovered he also had contractures in his knees and elbows. What began as a moment of fear quickly turned into fierce maternal protectiveness. “There’s nothing wrong with him. This is who he is,” Monjuri recalls. She remembers thinking Rudra’s habit of sticking out his tongue was just another endearing trait, not yet knowing it was due to low muscle tone. When medical professionals told Monjuri that Rudra might never sit, crawl or walk, she refused to accept those limitations. Alongside her two daughters, she got down on the floor with Rudra, demonstrating how to crawl and cheering him on every step of the way.

Their turning point came when Rudra was referred to Grandview Kids. For the first time, Monjuri felt heard, not just told what her son could not do, but asked what he could achieve. The focus shifted from limitations to possibilities, and that shift made all the difference. At Grandview Kids, Monjuri learned how to advocate for her son. When a hospital doctor dismissed her request for knee ankle foot orthotises (KAFOs), insisting Rudra wouldn’t walk, Grandview Kids’ physiotherapy team encouraged her to fight for him. With the support of casting and KAFOs, Rudra began walking short distances without the need for mobility aids.

Rudra has since benefitted from a wide range of services at Grandview Kids, including Physiotherapy, Occupational Therapy, Recreational Therapy, Speech-Language Pathology and has attended Grandview School. Monjuri fondly remembers how Andrea B., Grandview Kids’ Family Engagement Program Manager, helped her create an “All About Me” book. The book played a vital role in helping Rudra transition to his home school by educating teachers and classmates about his condition and the accommodations he needs.

Arthrogryposis continues to affect Rudra’s daily life. In his early years, he developed painful skin sores and underwent casting to gradually straighten his limbs – a terrifying process for both mother and son. Their Grandview Kids physiotherapist provided helpful information about Shriners Hospital in Montreal, where they self-referred, and Rudra has since undergone five major surgeries. One procedure involved inserting rings into the bones of his legs, requiring bi-monthly visits for five months to realign them. Complications during his July 2024 surgery allowed surgeons to place growth plates in only one leg. In January 2025, Rudra finally received growth plates for his right ankle, where fused kneecaps had previously prevented the procedure. Each time, Grandview Kids has been there, offering essential post-operative physiotherapy to help Rudra regain strength and mobility in a safe, supportive environment.

Now in his preteen years, Rudra is learning the power of self-advocacy. At school, he knows when to ask for help. Through Recreational Therapy at Grandview Kids, Rudra is reminded that he’s not alone. He finds comfort in knowing there are other kids navigating similar experiences and uses his story to educate and inspire his peers. “Sometimes I can’t reach things that are up on shelves or my KAFOs are locked, and I need to wait for an [Educational Assistant] to help,” he shares. His openness fosters understanding, compassion and lasting friendships. “His exceptionalities don’t stop his friends from loving him any less,” Monjuri says proudly.

Though the constant need for advocacy can be overwhelming, both Monjuri and Rudra find strength in knowing they’re not alone. Grandview Kids continues to provide the resources, therapy and even school support needed to keep them moving forward. “Even when I feel advocacy burnout,” Monjuri admits, “I can’t compromise—because I know other kids may need this help too.”

Raising a child with exceptionalities is undeniably challenging, but for Monjuri, it has been a gift.

“I feel blessed to have gone through this journey with Rudra. He is so amazing, and I wouldn’t have known this part of life and the world without him. He is my strength and my courage. When I’m tired and want to give up, I think—if Rudra can do it, I can do it twice over.”

The Complex Care Program celebrates its fourth anniversary of providing care to more than 75 children and youth with complex medical needs living in the Durham Region since its launch in May 2021. This clinic is specifically tailored for children and youth with significant health complexities that often require frequent hospitalizations, involve multiple healthcare specialists and need extensive medical care. Many children and youth who access this program depend on technological support for essential daily functions like mobility, feeding and breathing. In partnership with SickKids Hospital, Lakeridge Health and the Ontario Health at Home Central East, the clinic’s goal is to deliver coordinated care closer to home.

Grandview Kids’ Complex Care (CC) Program serves children of diverse medical complexities, demographics and ages. 18-year-old Rhys is a recent CC graduate. He was born prematurely at 29 weeks gestation age and has several diagnoses, including Cerebral Palsy (CP), chronic lung disease, severe scoliosis and kyphosis, a tracheotomy (trach) and gastrostomy tube (G-Tube), is non-verbal and uses a wheelchair. He is completely dependent on nursing and parental care, requiring round-the-clock total support. Despite his struggles, Rhys is described as a consistently happy and excitable teen who loves to laugh, listen to music and watch action shows. His mom, Becky, shares how participating in the CC Program transformed their journey of fear and isolation into a story of belonging, connection and celebration.

Rhys’ journey began differently from most preemies with a good Apgar score (a system doctors and nurses use to assess newborns after birth). His lungs, however, became easily fatigued, and every attempt to extubate him would result in him coding (a situation where a patient experiences a critical medical emergency, pertaining to cardiac arrest or respiratory failure) because his throat would close, causing further brain damage. He remained in the hospital for the first nine months of his life and was later diagnosed with CP when he was 1.5 years old.

Hopeful of the promises of early intervention, Becky did everything she could for Rhys in those early years, as she did not work to be able to take him to ability camps and optimize the abilities he had. Regrettably, Rhys lost many of his skills over the years due to resuscitation events, which happened every time his trach was removed. He could no longer swallow food, make verbal noises or use sign language. It was a terrifying time for both Becky and Rhys, whose awareness of these incidents increased over time. Thankfully, Rhys was able to undergo airway reconstruction in 2020, so accidental trach removal is less scary since he will not code. He knows he will be able to breathe again because he is on a ventilator.

Over the years, more disciplines at SickKids Hospital needed to be part of Rhys’ medical care. Sometimes the care plan did not always connect, leaving Rhys’ parents confused, especially in the beginning, as no one could provide a solid diagnosis or prognosis. The appointments were inconsistent, not on the same days and required careful full-day planning as Rhys’ family would always need a second trained caregiver to assist with transfers and travel from Bowmanville to downtown Toronto. These frequent hospital visits were also a financial burden as expenses accumulated through parking, gas and purchasing food.

Joining the Grandview Kids’ CC Program three years ago, “Changed his life and made an enormous impact,” Becky says gratefully. Care coordination became easy as clinic days involved his whole team working together to ensure everything was understandable and organized. They became a trusted voice that built rapport over the years as they “got to know your child and history, not only on the computer screen but truly grew up with him.”

Attending clinics was better for Rhys and his caregivers since they only needed to travel 15-20 minutes from home. Rhys also developed white-coat syndrome because of the trauma brought by frequent and painful hospital visits. Grandview Kids, on the other hand, a facility where Rhys received therapy and attended school, was a familiar place full of positive memories. CC clinic days brought peace of mind and happier trips, which led to less stress, enabling Becky to be a more present parent and caregiver.

Becky acknowledges the real threat of being on the precipice of caregiver burnout. “You must become that advocate early on, but you don’t know enough. You need to do your research, but when you go on the Internet, you find mixed information and navigating through everything is difficult,” Becky shares. She attributes a large part of Rhys’ success to the connection to the CC team. Their assistance in working through complicated choices to make informed decisions made their lives easier. Continuity of care was a top priority throughout the journey, even leading to and after graduation. Becky felt she could reach out to the team, knowing peer-to-peer support was present, and that an answer to a question or referral would be made if necessary. The team was “available, resourceful, friendly and truthful” over the years, making the transition from paediatric healthcare to adult healthcare less daunting.

Want to learn more about the Complex Care Program?

Click here to view the dedicated program page.

Vision Health Month is a time to focus on eye health and vision care, encouraging protective measures to protect and maintain healthy vision. Grandview Kids parent, Jessica, shares her family’s journey with their 3-year-old son Malcolm’s vision loss due to Septo-optic dysplasia (SOD). Though there is currently no known way to prevent SOD, early detection and treatment through therapy and support can help manage the symptoms.

Jessica and Mac have three sons, Keith, Theodore and Malcolm. When Jessica was pregnant with Malcolm, she had planned to have a home birth, but because he arrived well past his due date, they had to change their birth plan and have him at a hospital. This hiccup turned out to be a blessing in disguise. There were complications shortly after his birth as Malcolm’s body went into an adrenal crisis, his body temperature dropped, he was not feeding and his blood sugar was extremely low. They were admitted to the hospital’s neonatal intensive care unit (NICU) for a few weeks and connected with SickKids Hospital to be seen by the endocrine and ophthalmology departments. Malcolm was diagnosed with SOD (also known as de Morsier syndrome). This rare congenital malformation is characterized by the underdevelopment of the optic nerve while in utero, leading to blindness, adrenal insufficiency, diabetes insipidus and hypothyroidism. Malcolm also has secondary diagnoses of infantile spasms, hemophilia A and Chiari Malformation.

“We were in denial for a long time with regards to his vision loss. Searching for answers or interventions that would give us some hope that he could see something,” Jessica recalls. “We feared what blindness meant for his already so complex life. Vision is a huge part of our enjoyment, and we placed that same expectation on Malcolm’s life.”

To keep up with the growing list of Malcolm’s medical complexities, his care team connected his parents to Grandview Kids’ Complex Care Program and began receiving therapies. “You don’t want to be part of the Complex Care Program,” Jessica admits, “But it has been lifesaving.” She credits the Complex Care Program for the smooth management and communication of Malcolm’s appointments, medical professionals and connections. The Complex Care team provided consistency, relieving the overwhelm brought on by what felt like endless new diagnoses and care teams. Now, through Grandview Kids, they interact with the same people who know everything about Malcolm. Rather than addressing issues in isolation, they approach Malcolm’s care holistically and family-centred.

Malcolm relies on his parents, siblings and medical professionals to guide him in his life. He will be four years old this year, and his parents are realizing now that he is not transitioning to a more independent life like most toddlers at his age. He is still very dependent on his parents and the people around him, although he tries to show independence in his decisions and likes and dislikes. Malcolm has a unique personality for a child who, on paper, has many things that he must fight against and work hard for. He communicates his wants and needs through facial expressions, cries, laughs or loud noises so people will know he needs attention. He is beginning to say a few words, recognizing how to call upon different family members when he wants them. Malcolm is learning to adapt to his environment, demonstrating excitement, interest or pleasure through rocking back and forth and showing disinterest by pushing away objects with his hands or baring his teeth.

As Jessica and Mac prepare for Malcolm’s transition to school, they are excited to know that he will attend Grandview School for Junior Kindergarten with a team who know and love him. Although it does not take away from the stress of a new season, they know he will receive the services, support and opportunities to thrive in and enjoy school.

Malcolm has taught his family invaluable life lessons. They have learned the importance of remaining present, enjoying their family now and not dwelling on the stress of milestones and what Malcolm’s future will look like. Jessica acknowledges that “[They] are so different as a family because of Malcolm.” Her sons’ report cards “scream empathy” as they demonstrate character development made possible only through lived experience. “They are always trying to understand and help others out and be their support systems. This is because of Malcolm.”

“Malcolm was born blind and doesn’t know a life with sight. His life is still so enriched with the sounds of his favourite songs, his dad signing bedtime prayers, the heat from the sun on his face, the wind blowing in his hair and the excited voices of his brothers. He has taught us to appreciate every little thing around us, not just the obvious visual things.”

Interviews

Michelle and David’s advice to other families:

Want to learn more about the Complex Care Program?

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