Ayush’s Story: Fragile X Awareness Day

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.”