Family Engagement

Celebrating Stroke Awareness Month!

Zoey’s story began with two silent strokes before she was even born. These strokes in utero would lead to a diagnosis of right-sided hemiplegia cerebral palsy at 18-months-old. While cerebral palsy is part of her life, it does not limit 11-year-old Zoey. Today, she plays pickleball and basketball without hesitation, fills sketchbooks with art, bakes in the kitchen and laughs with her siblings, Miles and Quinn. Zoey’s parents, Jessica and AJ, prioritize family time, whether that means a visit to the zoo, watching cooking shows, playing UNO or Snakes and Ladders, or simply sitting together in the living room for movie nights. Their dog, Oreo, is never far behind and extended relatives, including great-grandparents, are part of her strong circle of support. Zoey’s journey is not defined by what happened to her, but by everything she has done since.

As a toddler, Zoey’s parents noticed that she was not hitting age-appropriate milestones and seemed to favour only the left side of her body. Her right hand often stayed in a fist, her toes curled under and she did not seem aware of her right side. “It was like she didn’t realize she had a right hand at the time,” they shared with their paediatrician while raising their concerns. That led them to testing at SickKids Hospital, where an MRI revealed that Zoey had experienced two strokes before birth. Like many parents receiving a new diagnosis, Jessica and AJ were left wondering what this would mean for Zoey’s future, independence and everyday life.

The diagnosis brought both uncertainty and the supports they needed. A referral was made to Grandview Kids, a place that would become much more than a therapy provider for Zoey’s family.

Zoey began physiotherapy, occupational therapy and participated in social work groups at Grandview Kids. Beyond the excellent clinical care, the welcoming, warm and “full of life” environment at Grandview Kids stood out immediately. Kids were not being called in for “appointments,” rather they were being invited to play. Therapies were play-based with goals set around what Zoey enjoyed, and because of this, Zoey thrived.

With the support of her care team, she worked on strengthening her right side. She wore an ankle-foot orthotic (AFO) on her right leg and used arm splints to encourage both hands to work together. “Grandview helped me use my right hand a lot,” Zoey says. “And they helped me learn how to walk up the stairs.” As a toddler, she relied on the use of a walker but with determination, grit and encouragement, she progressed. Today, she runs onto a soccer field without supports.

To Jessica and AJ’s surprise, the impact went far beyond physical development. Grandview Kids helped build Zoey’s confidence, resilience and her sense of belonging. Being surrounded by other children with similar experiences showed her that being “different” was something to understand and embrace. Grandview Kids also became a guide for her parents through the unknown, finding direction and reassurance in moments that once felt overwhelming. They learned how to advocate for Zoey, navigate difficult conversations and ensure she felt safe and supported in every environment. The ripple effect extended to Zoey’s older brother, Miles, now 14. Having attended many of her sessions, he absorbed the compassion modeled by Grandview Kids staff. At home, Miles became one of Zoey’s biggest supporters, encouraging and nurturing her in a protective way that shaped their bond.

Grateful for the support they received, Zoey’s family felt a strong desire to give back in any capacity they could. In 2016 and 2017, they became Run Ajax Ambassadors for Grandview Kids. Agreeing to be part of the Ambassador Program turned into a full community effort with a team of about 30 friends and extended family, including cousins and grandparents, rallying together. They fundraised, sold custom t-shirts, raised awareness and demonstrated the power of gratitude and community. Together, they raised thousands of dollars to support the very programs that helped Zoey grow.

Jessica and AJ are proud to share that Zoey is no longer just the child they once advocated for as she is becoming her own advocate. For a long time, talking about her diagnosis was not easy for her. Explaining what a stroke is or how cerebral palsy affects her felt intimidating. Over time, with reassurance from her family and the confidence she built through her experiences, Zoey found her voice. Now, when classmates or friends ask questions, she answers them in her own way and on her own terms. “My friend asked me a question about his mom, who also has cerebral palsy. He wanted to know how he could help her,” Zoey shares excitedly, recounting a recent opportunity for leadership and connection. Her parents remind her often that there is no right or wrong way to tell her story. “You know your body best. And when you’re ready, your voice can help others learn,” they encourage.

The journey has not been easy; Zoey has worked hard to lead a vibrant and full childhood. Her family has faced moments of misunderstanding, stares from strangers and uncomfortable questions like, “what’s wrong with her?” Through the guidance from Grandview Kids, they have learned how to manage expectations, respond and perhaps most importantly, how to educate and advocate – not just for Zoey – but for every child and youth to help build a more inclusive world.

Jessica and AJ encourage other parents to be their child’s voice until they find their own. “Every child deserves to be heard and respected. These conversations should start early, in classrooms and communities,” until they have trickled into the heart of every home.

Raising a child with autism and learning to let go of the life I imagined

Written by Grandview Kids parent, Paul Sahota

There’s something I’ve been thinking about a lot lately, even if I didn’t quite have the words for it.

I’m part of a private Facebook group for dads who are raising autistic children. A few weeks ago, another father shared something that hit me right smack in the gut. He wrote: “Does anyone else feel like they’re grieving a child that’s still alive?”

This is something I’ve felt countless times, but I never had the words for it. I never thought to describe it as grief, but that’s exactly what it feels like.

The life I thought we’d have

Before my son was born, there was so much excitement about this new chapter in my life. This is something my wife and I had wanted for so long. There was anticipation for everything that was coming, all the milestones like walking and talking. You see those moments everywhere, and you can’t wait to experience them for yourself.

I remember daydreaming about what fatherhood would be like.

I remember thinking about playing sports with my son, going to the local park and kicking a soccer ball around on freshly cut grass in the summer, or going to Canadian Tire to buy him his first baseball glove and finding one that would fit his hand. Then, going to the back of my condo or the front lawn of my parents’ home, and playing catch with a green tennis ball to start building his hand-eye coordination.

I remember daydreaming about teaching my son dance moves and us choreographing a routine to show off at family functions like weddings or anywhere there was a dance floor.

I remember thinking about having father-son days where we would go see a movie, go out for a bite to eat and then come home to hear my son tell my wife all about the fun we had.

I remember thinking about going out to restaurants for family dinners and having my parents join us from time to time. I imagined the end of the meal, wrestling with my dad over who would pay the bill.

I remember thinking about larger family dinners, with my siblings, my niece and nephew and my grandmother. Having all of us together and seeing different generations of our family sitting around the same table.

I remember driving past the park in my neighbourhood and seeing all the kids out there playing sports, and doing the math in my head to figure out when my son would join them. I remember thinking I would enroll my son in the soccer program once he turned three and sit on the sidelines, watching him while socializing with the other parents.

When reality set in

The magical day finally arrives, and your child is born. All those things you dreamt about and anticipated suddenly feel so much more real.

But as time goes on, your child starts to miss different developmental milestones. You begin to feel that something isn’t quite right. After going through multiple appointments with different doctors, you eventually receive the official diagnosis of autism.

After being emotionally winded and trying to process everything, you start to realize that many of the things you once imagined are not going to happen, or at the very least, they are not going to happen on the same timeline as other children.

That’s when the reality of the situation truly sets in. All those happy dreams I once held onto begin to hit me differently. What once brought me excitement now becomes a painful reminder of the life I don’t have, the life that was taken away from me.

What our life looks like now

Instead of going to the local park and kicking a soccer ball around, I focused on helping him master basic motor skills. Going up and down steps, holding his legs and guiding them so he knew which foot to put forward.

Instead of going to Canadian Tire to buy him his first baseball glove, I was buying padding to put on the corners of our walls because he struggled with balance and kept hurting himself every day moving through our home.

Instead of playing catch with a tennis ball to build his hand-eye coordination, we played catch with a balloon, because that’s all he could handle for a long time.

We tried taking him to restaurants. We also tried taking him to an autism-friendly event at the cinema. Both were incredibly high stress, and we weren’t able to manage his behaviour in those settings, so we decided to stop trying for the time being.

Family dinners look different now. We go to my parents’ home, and my wife and I take shifts. She feeds him first while I eat quickly, then I take him away from the table so she can have her meal. Most of the time, we’re not even able to sit and eat together with the rest of the family.

There are times when I come across pictures of my siblings and my family sitting down for dinner at a restaurant together, and I stay quiet and keep my emotions hidden, knowing we can’t be part of those moments because it would be too stressful.

Instead of enrolling him in a typical soccer program and sitting on the sidelines with other parents, I enroll him in an all-abilities program where I need to be with him one-on-one. Often, he doesn’t participate with the other kids, and we end up doing our own thing off to the side.

Learning to grieve what never was

I’ve come to realize that holding on to those dreams doesn’t serve me as a father or my family. What I need to do is grieve the life that never was. The experiences we cannot have. The family life that I once envisioned. I need to grieve for my son, for myself as a father, and for my family as a whole.

But just like any kind of grief, it’s not something you process once and move on from. It shows up again and again. There are moments that trigger memories of things that never actually happened, but that I once imagined so clearly. I can’t allow myself to dwell on those moments, but I also can’t ignore them. I need to find a way to grieve them, so I can come back and be present for what I actually have.

Because even though this life is very different and filled with constant challenges, there is still so much beauty in it. There is still so much joy that my son brings into our lives. And in many ways, this journey has changed me in ways I never expected. I’m more compassionate. I’m more patient and understanding. I’m more loving. I’ve learned to appreciate the small things in life and the small wins. Because with autism, those small wins often mean everything.

Letting go and moving forward

Even now, those moments still come up. They don’t just disappear. Just like any kind of loss, they show up when you least expect them.

When they do, I try to treat them the same way I approach meditation. When my mind starts to wander, I have to catch those thoughts, acknowledge them and release them from my mind. If I don’t, the grief can take over, and I’m no longer present for my son or my family in the way they need me to be. And when that happens, it can pull me into a downward spiral of negative thoughts, and ultimately into habits and coping mechanisms that don’t serve me or my health.

But when I am able to catch those moments and release them, it allows me to stay resilient. It allows me to bounce back and stand firmly in the present moment. It allows me to show up as the father my son needs right now.

The truth is, those thoughts will probably never fully go away. Just like grieving the loss of a loved one, it may become less intense over time, but it doesn’t disappear. And maybe that’s because grief is a reflection of love. You only feel it because you care so deeply.

What I try to remind myself of is how far my son has come. Despite all the obstacles and challenges in his way, he continues to grow. I need to appreciate him for where he is now and what it’s taken to get here.

At the same time, I have to continue grieving the life that never was, while also allowing myself to envision a new life that is possible with him. It may be different than what I imagined, but it can still be a life filled with beauty, meaning and excitement.

And maybe that’s the work now. Not holding onto the old vision but allowing myself to carve out a new one.

At five years old, Ahaana’s deep joy and desire for connection are easily observed by everyone around her. Her playful but intelligent conversation demonstrates how she is goofy, creative, endlessly curious, witty and has deep empathy for others. She lives with her parents, Ankit and Mansi, and her one-month-old baby brother Agastya.

Ahaana is surrounded by love that stretches across generations and cultures, enjoying visits from her grandparents on weekends or when her family travels to India regularly to stay connected to their roots. Ahaana loves science experiments with her dad, Ankit, and crafts and reading with her mom, Mansi. Social by nature, Ahaana is often the first to help a new child at school, guiding classmates through routines, holding hands to provide comfort and even helping them put on their winter attire. A natural leader with a strong sense of responsibility, she is learning multiple languages, including Hindi and French. She has a love for music, dance and creativity that continues to grow.

Ahaana’s drive and ability to explore her world were once only a dream to her parents. Born during the COVID-19 pandemic, she entered a world already filled with much anxiety. Shortly after birth, Ahaana failed her newborn hearing screening in both ears. Like many families, Ankit and Mansi were initially reassured that this was common and often temporary. However, follow-up tests through Grandview Kids’ Infant Hearing Program and Audiology service told a different story. After three screenings and a detailed audiology assessment, Ahaana was diagnosed with bilateral profound sensorineural hearing loss. This meant she could not hear sounds at all in either ear, and traditional hearing aids would not help.

With no family history of hearing loss, the diagnosis was shocking. Due to COVID restrictions, only one parent could attend appointments, making the experience even more isolating. At home, Ankit and Mansi found themselves testing sounds–calling her name, dropping toys, turning on music–hoping for any reaction. Slowly, it became clear that Ahaana was not responding to sound, though her other senses were heightened. She relied on physical closeness, movement and touch to feel safe and connected.

Like many parents, Ankit and Mansi moved through denial, grief, fear and overwhelming uncertainty. But once the diagnosis was fully understood, they reached a turning point: acceptance. With that acceptance came the determination to learn everything they could and to make the most informed, loving decision possible for their daughter.

Ahaana’s care journey became a shared decision-making process, guided by specialists at The Hospital for Sick Children (SickKids), Grandview Kids and cochlear implant support organizations. The family learned about cochlear implants, how they bypass underdeveloped parts of the ear and use electrical signals to stimulate the auditory nerve, allowing the brain to learn sound over time. Speech therapy, they learned, would be just as critical as the technology itself.

They researched extensively, attended virtual meetings and connected with other families, including a cochlear implant community advocate who lived nearby and shared her own lived experience of parenting a child with cochlear implants. Seeing older children with cochlear implants thrive gave them hope. While the risks of surgery were frightening, the compassion and expertise of the medical team, especially their surgeon, Dr. Papsin, at SickKids, helped ground them. Rather than focusing on unanswered questions like “why,” the team encouraged them to focus on what came next: recovery, growth and possibility. Their SickKids Audiologist, Dr. Laurie, was a source of constant support since Ahaana was two months old. She took the time to listen, answer their queries and assist the family in overcoming the learning curve of cochlear implant use.

Throughout this time, Grandview Kids played a pivotal role. Before surgery, Ahaana received audiology support, early speech-language pathology (SLP) and guidance from educators specializing in deaf and hard-of-hearing children. Even while knowing hearing aids would not restore Ahaana’s perception of sound, they were used to help her and her parents become familiar with the devices and routines. More importantly, Grandview Kids supported the family emotionally, acknowledging the grief, helping them prepare for surgery and reminding them they were not alone. Ahaana’s Speech-Language Pathologist, Alishia C., exemplified Grandview Kids’ values of belonging, excellence and connection through her kind, caring and family-centred service. Alishia helped Mansi and Ankit discover their own potential, amplifying their voice and value as partners in care, and celebrated successes together along the way.

*Ahaana and her*
*Speech-Language Pathologist, Alishia C*.

In October 2021, Ahaana underwent a six-hour bilateral cochlear implant surgery. It was an emotional day for her parents, but the surgery was successful. Recovery was swift, and by the time she arrived home, Ahaana was already playing on her playmat, resilient and determined. One month later, on November 8, 2021, a day before her first birthday, her implants were activated. Six months after activation, the results were extraordinary. With consistent speech therapy, family dedication and ongoing support, Ahaana’s speech developed rapidly, soon on par with her hearing peers. She hums, sings and listens to music every night before bed, and she is preparing to learn piano! Her cochlear implants, lovingly called her “magic ears,” have become a celebrated part of who she is.

Grandview Kids continued to walk alongside the family before, during and long after surgery. Through audiology check-ins, SLP and the Infant and Child Hearing Program, Ahaana’s parents gained confidence in their approach and reassurance that they were doing the right things. However, it was the Family Engagement Program, specifically their Caregiver Café, a monthly networking and respite event for Grandview Kids parents and caregivers, that truly transformed their journey. Through connection with other families, Ankit and Mansi found a powerful sense of belonging. Hearing others’ stories helped them heal, dream again and even find the courage to grow their family. They realized the power of community, not just for support, but for the discovery of their own strength and potential as advocates.

Today, Ahaana’s family celebrates not only how far she has come, but the community that helped make it possible. They now volunteer, share their story openly and connect with families just beginning similar journeys. They are raising awareness, offering hope and reminding parents to give themselves grace. They are teaching Ahaana that her differences are her special powers, to find beauty in them by making her headbands colourful and pretty and to learn to advocate for her needs

As Grandview Kids prepares to celebrate the 30^th annual Golf Fore Grandview Kids Charity Golf Classic, families like Norah’s help share why this community comes together year after year, and why continued support is more important now than ever. The story of Norah and her parents, Zaina and Mike, reflects both the challenges families face and the profound impact of donor generosity.

Norah is five years old and the centre of a close-knit circle of care that includes her parents and grandparents. Norah is described by her family as independent, fiery and “a ball of sunshine,” bringing light into every room she enters. She is always on the move, thriving in spaces where she can climb, explore and play freely. Whether she is at the trampoline park, swimming in the pool or playing with her dolls at home, Norah embraces the world with enthusiasm. A deeply affectionate child, Norah loves cuddling with her mom and seeks comfort from trusted adults as she explores new environments, textures and experiences.

Norah’s developmental journey began early. At 15 months old, her family noticed delays during a routine paediatric check-up, prompting a referral to Grandview Kids. Soon after her referral, she began receiving speech-language pathology (SLP) and Applied Behaviour Analysis (ABA) services. At two years and one day old, Norah was officially diagnosed with autism spectrum disorder (ASD). Zaina and Mike remember the diagnosis as both overwhelming and clarifying. They had seen signs, including limited verbal communication, reduced eye contact and a tendency to focus on details rather than typical play, though hearing it confirmed was still emotional. At the same time, it marked a turning point: a pathway to the support Norah needed and deserved.

Grandview Kids became an essential partner in Norah’s journey, not only for her but for her entire family. Through SLP and ABA services, Norah began building communication and learning skills that continue to evolve to this day. Equally important was the support her parents received through social work. Jennifer L., a dedicated social worker at Grandview Kids, helped Zaina and Mike gain the tools to process their emotions, navigate resources and shift their perspective during difficult moments. Through therapeutic approaches such as Acceptance and Commitment Therapy (ACT), they learned to focus on what matters most, even on overwhelming days.

Grandview Kids, in partnership with Lake Ridge Community Support Services, Resources for Exceptional Children and Youth – Durham Region and The Regional Municipality of Durham, offers a crucial Entry to School (ETS) program as part of the Ontario Autism Program (OAP), Early Years Pathway. Before ETS, Norah attended a traditional daycare without specialized support, often spending much of her time on her own. Through ETS, she began learning routines, building attention skills and following directions. This created a foundation that changed how she engaged with the world around her.

Today, Norah is a student at Grandview School, where her parents say she is not only supported but truly understood. In a setting where every staff member understands the needs of students like Norah, she is learning to thrive in group environments while continuing to build independence. From opening her lunch and managing her belongings to putting on her shoes and recognizing her name, these everyday “inchstones” are celebrated as meaningful achievements.

Norah also uses an augmentative and alternative communication (AAC) device, and her care team works closely with her family to ensure consistency between home and school. This collaborative approach brings therapists, educators and parents together, demonstrating the level of care that donor support helps make possible.

Grandview Kids has created a community for Norah’s family. Through the Family Engagement Program’s offerings, such as park playdates, caregiver cafes and inclusive family events, they have connected with others who “get” their lived experience. This deep connection helps replace feelings of isolation with those of belonging. “It’s easy to isolate yourself and think you’re the only one going through these things,” Zaina admits. “Obviously that’s not the case, but you won’t know until you connect with others.”

Zaina and Mike find purpose in giving back to their community. The two participate in Grandview Kids’ Ambassador Program and Family Advisory Council (FAC) and Grandview School’s school council. Their contributions to these vital groups enable them to support and uplift other families while saying “thank you” to Grandview Kids. This sense of community changed everything, giving Norah’s family hope, confidence and the reassurance that they are not alone. It also shows them what is possible when the right supports are in place.

These transformative services do not happen without the generosity of donors. Every therapy session, classroom support and family connection are made possible by a community that chooses to give. For families like Norah’s, that support lifts an incredible weight. It can provide access to services they might not otherwise afford, reduce stress and create opportunities that shape a child or youth’s future. Donor support changes lives and how families see their future. It gives children like Norah the chance to build skills, confidence and independence in ways that once felt uncertain.

Norah’s journey is just one story, but it represents so many others. This year’s 30th annual Golf Fore Grandview Kids is an opportunity to continue and expand this impact. Every donation plays a critical role in ensuring that more children, youth and families can access the care and community they need, when they need it. Your support powers potential.

When 15-year-old S walks into a room, she radiates light. People naturally gravitate towards her. They are drawn to her social, expressive energy. She loves music, singing, dancing and thrives on connection. She is happiest when she feels included and known. She always strives to bring her family together, whether through bowling nights, shared meals, playing Wii or watching movies. She really enjoys singing with her dad.

S has a sharp memory and sings in multiple languages (at least nine), including English, Spanish, Urdu, Arabic, Swahili and Afrikaans and has memorized the lyrics to hundreds, if not thousands, of songs across multiple genres. She values routine and predictability and can be unsettled by loud, unpredictable noises or sudden changes, but within her comfort zone, she flourishes.

As a newborn, S was under birth weight and later diagnosed at The Hospital for Sick Children (SickKids) with failure to thrive during infancy. She struggled with feeding, sleep and growth. She suffered from extreme colic, uncontrollable crying and sensory processing. S’s mother, Sharon, consulted with a paediatric nutritionist to help improve her symptoms and was then referred to a naturopathic doctor when things did not improve. Through a food sensitivities test, it was discovered that she had a leaky gut and had developed severe sensitivities to certain foods, despite being on a gluten and dairy-free diet.

In 2012, at just two years old, S was referred to Grandview Kids by her family doctor as she was failing to meet her developmental milestones. Upon assessment, a medical team was established, which included a developmental paediatrician, speech-language pathologist (SLP), occupational therapist (OT) and physiotherapist (PT). Little did she know that this was the beginning of her lifelong journey at Grandview Kids.

Initially diagnosed with global developmental delay, S was referred to Lakeridge Health for genetic testing to determine the underlying cause. S was diagnosed with Williams Syndrome (WS), a rare genetic condition affecting approximately 1 in 10,000 people. Caused by a random partial deletion on chromosome 7, which includes the elastin gene, the marker gene for a WS diagnosis.

Those with WS are characterized by similar facial characteristics and an array of medical problems, including cardiovascular disease, gastrointestinal (GI) issues, developmental delays and learning challenges, which S also experiences. Despite these health challenges, they are also known for their friendly, highly empathic qualities, which are part of S’s charming personality. In particular, she has speech and language challenges, decreased cognitive and physical abilities, and sensitivities to loud, unpredictable sounds such as thunderstorms, fire alarms, dogs barking and people laughing or coughing. Her heart is regularly screened by a pediatric cardiologist due to early detection of a heart murmur. Those with WS are prone to cardiovascular narrowing of the arteries and heart attacks.

The diagnosis brought mixed emotions of fear, relief and disbelief all at once. Her parents suspected something was not right, especially as the youngest child of three, but did not yet have the language or roadmap to understand what lay ahead. Sharon was plagued by guilt, thinking it was something she had done. Learning that this random deletion in their daughter’s chromosomes occurred at the time of conception and not by anything they did before or during pregnancy was the first step in a long journey ahead.

What made it harder was the condition’s rarity. It is difficult for people with WS to access dedicated resources, support for treatment, continuity of care or find medical professionals with experience in WS. While in the U.S., those with WS have access to established clinics and conferences, Sharon and her family often felt like they were navigating uncharted territory at home. Still, even in those early days, one thing was clear: S loved music. A simple music box could calm her, distract her enough to eat and bring her joy. Music became a bridge, a way she could connect with the world.

Over the years, S’s Grandview Kids services also expanded to therapeutic recreation, audiology, social work, the orthopaedic clinic, optometry and, most recently, the Adolescent Transition Program. From 2014-2016, Sharon attended monthly Parent Support Group meetings on Saturdays to connect with other families facing similar challenges of raising a child with disabilities.

For Sharon, Grandview Kids quickly became more than a therapy centre. “Grandview Kids became our home away from home,” said Sharon. “It’s the one place where I never had to explain my child or justify her needs. I could just let my guard down and be a mom.”

In other community spaces, Sharon often felt pressured to explain, justify or defend her child’s needs. At Grandview Kids, that pressure disappeared. Parents sat together in waiting rooms without labels or explanations, just shared understanding. No one asked why a child behaved a certain way, and no one judged, so guards came down.

Once S aged out of the Grandview Kids services and entered the school system, she continued to receive school-based rehabilitation services (SBRS). Sharon shares that over the years she has learned to be S’s voice, advocating for her, especially during COVID-19 lockdowns, when she assumed the unofficial title of “educational assistant.” As a social butterfly, she found that those years of isolation and social distancing had a profound effect on her personality, and returning to the physical classroom was a slow adjustment.

Since then, S has learned to find her own voice with Grandview Kids by her side and with mom as her lead example. She is thriving in new ways, enjoying high school and has grown tremendously since overcoming early communication barriers. With advocacy support from her parents and speech therapist, her teachers learned how to better understand and support her. She is now in a practical learning program (PLP) classroom and beginning to develop self-advocacy skills. While transitions can still be hard and loud environments overwhelming, she is confident in who she is and that confidence has been nurtured by her community.

Equally important are caregiver supports through the Family Engagement (FE) Program’s weekly park playdates, parent and youth social nights, monthly coffee chats, summer days at the Barrett Centre rural farm and outings to the pumpkin patch. These moments allow families to build confidence, clarity and connection. One of the most meaningful parts of S’s journey has been the Adolescent Transition Program (ATP), where she met Peer Navigator April W., who has become like extended family.

“April has a big heart and specialized training and combines that with her lived experience to help support other families navigate their journey,” Sharon notes.

ATP was co-designed by parent and youth advocates and various members of Team Grandview. ATP puts the family voice at the centre of program development. The program is supported by a grant from TD Bank and pioneered by FE Program Manager, Andrea B. She brings both the parent/caregiver and peer lived experience to provide support and resources to families when clients transition from paediatric to adult care. Sharon also attended ATP workshops that share vital information on funding, guardianship and post-secondary education.

Since being part of ATP, when S hears “Grandview,” she thinks of the amazing friendships she has fostered and the fun dance parties that she gets to attend. The enthusiasm is spilling into other areas of her life, including therapy and school. Sharon sees the excitement in S’s eyes and the joy bubbles and overflows.

To Grandview Kids families who feel hesitant or unsure about making connections with others, Sharon offers simple advice,

“If you’re hesitant, just come. You don’t know what you’re missing. You’ll learn, you’ll connect and you’ll realize you’re not alone.”

Living with a child with physical, communication or developmental needs comes with uncertainty, but it also comes with extraordinary joy, resilience and connection. S reminds everyone she meets that difference is not something to fix, but something to understand, support and celebrate. At Grandview Kids, S receives services, but she’s also dancing, connecting and shining exactly as she should.

Elysha, a teacher, and Tyrone, an electrician, are the parents of Adaline (7) and her younger sister, MaKinleigh (3). They built a life that is busy, loud and full of movement, just the way their daughter Adaline likes it. Between outdoor adventures, time at the park, weekends at their cottage and their new trailer, the family is always on the go. Adaline thrives in that energy, seeking out stimulation and excitement, sometimes in ways that keep her parents on their toes!

Adaline is a thrill-seeker with no fear. She loves swimming, spinning chairs, loud noises and anything fast, especially Sea-Doos, snowmobiles and even the lawn tractor. Her personality is unmistakably spicy, determined and full of joy. Adaline communicates in her own ways through her expressive eyes, cheeky smile and a signature eyebrow raise that signals either excitement or a bit of mischief. She is clever and bright, and above all, incredibly tenacious. She continues to push past the expectations set for her.

Adaline was one month old when she was diagnosed with Wolf-Hirschhorn Syndrome (WHS), a rare genetic disorder caused by a deletion on chromosome 4. Even within her first week of life, doctors had their suspicions as she was born very small. She was only 3 pounds 13 ounces at nearly 37 weeks gestation, and had difficulty feeding. Subtle physical indicators, including slightly wider-set eyes, small skin growths near her ears and indentations around her shoulders and face, raised concern. She also experienced brain bleeds, adding to the complexity of her early medical picture. Elysha and Tyrone agreed to genetic testing and were told to expect a diagnosis with much milder effects, but when the results arrived, they felt blindsided.

Adaline’s WHS diagnosis came on the very day they were preparing to leave the hospital’s neonatal intensive care unit (NICU), completely changing their path forward. They grieved the life they had imagined, feeling fear and deep uncertainty about the future. For many children with WHS, challenges can include developmental delays, feeding difficulties, seizures, heart defects and hearing, vision, immune and muscle tone differences. Each child’s experience with WHS is unique.

Adaline’s early years were medically intense. She spent 28 days in the NICU and had repeated hospitalizations. For the first year and a half, the hospital became a second home. Feeding was one of the biggest struggles as she required a nasogastric (NG) tube and vomited frequently due to a submucosal cleft palate. Shortly after Adaline came home from the NICU, Tyrone and Elysha were set to be married in May of 2019. At the time she was combo feeding with bottles and through the NG tube. “We really wanted to see Adaline’s beautiful face without the NG tube in our wedding photos as the tape from her NG covered half of her face. Her paediatrician said we could remove it for a few days and put it back in after the wedding.” Adaline had done well without the tubes and continued to maintain her weight that a few days after their wedding, their paediatrician approved the complete removal of the NG tube. She was monitored across multiple specialties, including cardiology, immunology, ear, nose, and throat (ENT) and ophthalmology. Her immune system was fragile, requiring the family to live in a small, protective bubble. The risk of seizures loomed constantly. It was not a question of if she would begin having them, but when. At 15 months old, that fear became reality.

Adaline’s seizures were severe and often triggered by illness or low oxygen levels, caused by choking and aspirating. Most episodes required hospitalization and emergency interventions, like intubation. These moments were terrifying and, at times, traumatic. Over time, Elysha and Tyrone learned not only how to respond but also how to guide medical professionals unfamiliar with Adaline’s rare condition. Since WHS presents differently in every child, they became her experts, voice and advocates.

Today, Adaline’s seizures are better controlled with the help of seizure medication and parental vigilance. Her last major one was in February 2025, and for the first time, it did not require a hospital stay. It was a milestone that reflected years of persistence, learning and advocacy.

Despite everything, Adaline continues to defy expectations. Skills that specialists once thought unlikely, she has achieved through sheer determination. From the very beginning, Grandview Kids became a cornerstone of support for Adaline and her family. Referred shortly after leaving the hospital, she began services at three months old.

At Grandview Kids, the family accessed coordinated care including developmental paediatrics, physiotherapy, occupational therapy, speech-language pathology, therapeutic recreation, nutrition and social work services. Blocks of therapy taught Elysha and Tyrone essential early intervention strategies to guide Adaline’s progress and even led her to independent walking, something that was once considered impossible.

During her most fragile years, Adaline’s family was part of Grandview Kids’ Complex Care Program. This coordinated care team of Adaline’s specialists from Grandview Kids, The Hospital for Sick Children (SickKids), Lakeridge Health and the Ontario Health at Home, Central East, was impactful. This team understood Adaline as a whole child. When her seizures were severe, the team helped fast-track interventions and ensured seamless communication between specialists. They became a central hub for her care.

The community they experienced at Grandview Kids was also profound. At Grandview Kids, Elysha and Tyrone connected with many other families, forming strong friendships and a shared understanding. Grandview Kids Summer Camp and Family Engagement Program events gave Adaline space to discover and belong. Adaline was also fortunate to attend Grandview School to prepare the family for her transition to the mainstream school system. The gratitude Elysha and Tyrone have for the Grandview Kids community they formed is immeasurable.

Today, Adaline’s biggest challenge is communication. She is considered pre-verbal, with a handful of spoken words and some gestures. While her receptive language is strong, understanding much of what is said to her, expressing herself can be frustrating. This gap often shows up in her behaviour. Without a reliable way to communicate her needs, emotions can escalate quickly. Her family continues to explore tools like augmentative and alternative communication (AAC) devices, though attention, vision and motor challenges add complexity.

Transitions, like starting mainstream school this year, have also been difficult. Everyday activities, like eating, still require patience and creativity. Through it all, Adaline continues to grow on her own timeline. Elysha and Tyrone’s journey has taught them lessons they now share openly with other families.

Elysha and Tyrone’s lessons:

Don’t compare.
Comparison is the thief of joy. Every child, diagnosis or not, has their own path. Adaline’s journey cannot be measured against anyone else’s, not even her sister’s.

Be patient and take it day by day.
At first, thinking too far ahead felt impossible. Focusing on the present day-to-day steps, made it manageable.

Celebrate the “inchstones.”
Every victory matters. What may seem minor to others can be monumental for your child.

Advocate fiercely.
You will become the expert on your child. Ask questions, speak up and challenge kindly when needed. Doctors do not have all the answers, especially with rare conditions. They are also learning with and from you.

Find your community.
Whether it is through support groups, organizations like Grandview Kids or other families with different diagnoses but shared lived experiences, connection matters. You are not alone.

Don’t lose sight of joy.
Life may look different. It may involve more planning, equipment and confusion, but it can still be full of fun, laughter and meaningful moments.

Though the future remains uncertain, what has changed is how Elysha and Tyrone face that uncertainty. They now have resilience, community and shared understanding that Adaline will continue to surprise them. If there is one thing Adaline has shown from the start, it is that she is writing her own story.

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