Interviews

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.” 

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.” 

When 25-year-old Janae is not studying, she professes her love of singing, going for walks and spending time with friends and family. She graduated from Toronto Metropolitan University, receiving a Bachelor of Social Work (BSW) degree with distinction, and is currently pursuing her Master of Social Work (MSW) with a focus on children and families at the University of Toronto. Janae’s studious disposition stems from her mom, Catherine’s, unwavering validation and her desire to support children and youth with physical, communication and developmental needs and their families. Her lived experience, although riddled with barriers paired with social challenges due to her exceptionalities, has compelled her to become an advocate for others. 

Janae was born several weeks early and had a low birth weight but was otherwise deemed healthy enough to go home. However, in the two weeks that she was home, Catherine, a paediatric Registered Nurse at SickKids Hospital, noticed that Janae was not breathing or sucking appropriately. She brought her to a local hospital twice, only to be dismissed as suffering from postpartum depression. Intuition led her to visit SickKids Hospital, where Janae was admitted and diagnosed with congenital heart disease (CHD). A procedure called a “cardiac catheterization” revealed several heart defects and the need for heart surgery. However, post-procedure, Janae suffered a massive stroke. The initial prognosis was poor, prompting her physician to plainly state that Janae’s condition was “incompatible with life.” This life-altering experience was devastating for Catherine, who thoroughly understood the severity of her daughter’s condition with her medical background, but as a mom, felt it very hard to absorb. 

Janae’s first six months of life were spent at SickKids Hospital. She had several heart repairs and required a temporary feeding tube and a pacemaker. Once stable enough to be home and out of their program, she received home care due to her medically fragile state. Janae received a secondary diagnosis of Cerebral Palsy (CP) as the stroke severely affected the function of her left side, along with her speech and sight. Eventually, her care was transitioned to Grandview Kids, where she would receive many years of Occupational Therapy (OT), Physiotherapy (PT), Speech-Language Pathology (SLP) and care within the Botox ® Clinic.  

With lots of hard work and determination from Janae and her family, Janae learned how to crawl, walk and talk at her own pace. Grandview Kids’ OT supported her by giving her tools to help with school. The stroke caused her left hand to be spastic and at one point they curved inwards and looked fisted. She used grips for pencils and equipment to keep her papers in place for writing, as she did not have the stability to hold them with her left hand. Janae described feelings in her left leg akin to “sleeping” or numbness. Her PT worked on improving Janae’s strength and mobility. In early childhood, she had splints in both hands and legs. She also received Botox ® injections for her left hand and leg, which she continues to do presently, for their effectiveness in reducing spasticity.  

Every developmental stage brings on new challenges, but the biggest hurdle that Janae continues to face is the social aspect of life with exceptionalities. She required special support in school, but kids would question and tease her. “This made me feel very out of place due to the accommodations, but I was just trying to get to the same place everyone else was already at,” Janae admits. High school was harder and meaner when it came to her peers and teachers, who sometimes dismissed her accommodations as trying to get out of certain classes. She connected with another Grandview Kids youth and banded together against the negative social interactions they faced at school. She began to advocate for herself more, vocalizing her needs and requesting support letters from her Grandview Kids PT and Botox ® Clinic physician.  

Catherine ensured that Janae participated in as many Grandview Kids programs as possible to enhance her independence. She attended programs that taught life skills like cooking, dressing and caring for herself, as well as those that provided information on maturing, puberty and body image.  

“Grandview Kids tailored programs to where Janae was based on her capabilities, which is amazing to think that this process began over 20 years ago,” Catherine recalls fondly. “Other kids and youth in the classes had varying disabilities, so she didn’t feel singled out. I took every opportunity for Janae to see not only the negative piece of school but also encouraged her to see that other people were also dealing with challenges in life.”  

Janae confesses that she sometimes still has doubts about her potential, but her mom is and always will be her biggest advocate. “My mom is always saying to do my best and that I’m able to achieve anything. It’s easy to self-doubt and focus on your disability when everyone sees the disability and not who I am. It has been a real struggle to be okay, but I’ve learned that that does not define me as a person,” she openly shares. Her mom has taught her to stop “putting herself in the box” and that she can “overcome the odds.” Janae acknowledges the need for a strong network and support system, as it influenced how she viewed herself as a black woman with a disability navigating life. Catherine’s constant affirmations prompt her to encourage others in their journeys and teach them about the importance of self-advocacy.