Family Engagement

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.

Siblings by Siblings Program

National Siblings Day is celebrated each year on April 10. To honour this, we are proud to feature Grandview Kids’ “Siblings by Siblings” program!

Siblings by Siblings is a peer-led support program created specifically for siblings of children with disabilities or medical complexities. The program provides a safe, welcoming space where siblings can connect with others who understand their lived experiences. Through interactive discussions, games and creative activities, participants build friendships, strengthen coping strategies and recognize one another for their unique roles within their families.

Where did the idea for the program come from?

Siblings often carry a complex mix of emotions, such as pride, protectiveness, responsibility, frustration and love. While they play an important role within their families, they may not always have a dedicated space to process their own experiences. Siblings by Siblings was developed to ensure siblings of Grandview Kids clients feel seen, heard and valued as individuals. The program emphasizes building resilience, confidence and peer connection.

What happens in the Siblings by Siblings program?

The Siblings by Siblings Team, which includes Peer Navigators Ella, Fizza, and Isabella, hosts evening events throughout the year at our Ajax headquarters, The Jerry Coughlan Building. At each event, the team organizes a variety of activities, which have included thoughtful discussions on burnout, decorating cupcakes (for themselves and their siblings), self-care trivia, card games and creating self-care booklets and loot bags.

The program is open to siblings ages 10 to 18 and is positively impacting those who participate. When asked about their favourite Siblings by Siblings activities, participants shared, “My favourite activity is playing with my peers and connecting with them,” and “Making cupcakes — it was so much fun and calming. I just had fun!” When asked about the most inclusive activities, attendees noted, “Talking about my experiences with my siblings,” and “Playing Uno — I felt so included.”

The responses from Siblings by Siblings participants reflect the importance of peer connection, shared storytelling and meaningful yet fun engagement.

Attendance and growth

The promotion of the program’s launch reached 2,809 views (as of August 15, 2025). This attention demonstrated the strong community interest in sibling-focused programming. Since the pilot event, we have seen consistent growth, with attendance ranging from 8 to 16 siblings per session. Notably, 8 participants have been recurring attendees since the very first pilot event, highlighting sustained engagement and the value siblings are finding in the program.

Siblings by Siblings continues to grow as a meaningful and anticipated offering within Family Engagement programming. National Siblings Day provides a wonderful opportunity to celebrate siblings and spotlight the importance of investing in spaces designed for them and by them.

Testimonials

“My name is Aaleyah, and I’m in Grade 8. Being part of the Siblings by Siblings program at Grandview Kids has meant a lot to me. Having a sibling with a disability can feel overwhelming because there are a lot of extra responsibilities and moments when things are harder or different from other families. I adapted to how my brother made my life different, and sometimes that was kind of hard for me. Being part of this program helped me realize I’m not alone, and I’ve learned to be more patient, understanding, and proud of my brother and everything he accomplishes.

My favourite part of the Siblings by Siblings program is that it’s run by people with siblings with a disability, just like me, so they actually understand and relate to what it’s like. It makes it easier to open up because they’ve had similar experiences. I also love the events where we can connect, share stories, and just have fun together. This program has given me a safe space to talk about my feelings without judgment, and I would definitely recommend it to other kids who have a sibling at Grandview Kids because it helps you feel heard, supported, and understood.”

– Aaleyah, Grandview Kids sibling

“I really liked going to the Siblings by Siblings group. At first, I wasn’t sure what to expect, but it ended up being really fun and comfortable. It was nice meeting other kids who understand what it’s like, and it made me feel less alone.

I liked that we could talk about our feelings without it being awkward or forced. Everyone was really easy to talk to, and the environment was calm and relaxed. It actually helped me open up more than I thought I would. Overall, I had a really good experience, and I’m glad I went. I’d definitely recommend it to other siblings.”

– Kaleb Fancy, Grandview Kids sibling

“I had a really good time at the Siblings by Siblings group. It was lots of fun, and I liked being there with other kids. My favourite part was the snacks and drawing. It was really relaxing and easy to just hang out and enjoy. I can’t wait for the next one!”

– Kareem Fancy, Grandview Kids sibling

To register for an upcoming “Siblings by Siblings” event, follow Grandview Kids on Instagram and Facebook or speak to a member of the Family Engagement Team!

Julie Beazley is a Digital Publisher, Graphic and Web Designer based in Oshawa, Ontario. She creates and shares resources through her small business, including resources, advocacy tools, printables and heartfelt reflections from life with her son, Liam. Julie channels her professional expertise into empowering other families walking similar paths.

13-year-old Liam lives with his mom, Julie, his stepfather, Brent, their dog, Fox, and a couple of parrot fish. He loves music, dancing, using the bucket swing at parks and cracking up at funny movies. Liam thrives on experiences like bowling, theme park rides, ziplining, canoeing, hovercraft adventures and ATV rides through muddy forest trails. He has been on the ice with the Toronto Maple Leafs, navigated through jungle and mangroves by boat and embraced life with a boldness many only dream of. In Julie’s words, Liam is “extremely mischievous,” full of laughter and loves engaging with his family and friends. Together they have built a life that is equal parts organized, adventurous and beautifully unpredictable.

Liam entered the world at 34 weeks gestation in Costa Rica, weighing just 5.5 pounds. Doctors immediately noted facial features consistent with Trisomy 21 (Down Syndrome), along with jaundice and a concerning cardiac murmur. Julie flew back with Liam to Toronto, where she is from, and he was transferred to The Hospital for Sick Children (SickKids) as an infant and underwent open-heart surgery at just seven weeks old to repair a congenital heart defect (Tetralogy of Fallot with aortic stenosis and AVSD). Down Syndrome is a genetic condition caused by an extra copy of chromosome 21, resulting in 47 chromosomes instead of the typical 46. It causes mild to moderate cognitive delays, distinct physical features and potential health issues like heart defects. It is not caused by anything parents do and occurs by chance.

Liam has what Julie calls a “trifecta” of diagnoses: Down Syndrome, cerebral palsy and autism spectrum disorder. The combination results in low muscle tone working against spasticity, sensory challenges and global developmental delays. He is non-verbal, though deeply communicative through sounds, gestures and expression. Liam’s receptive understanding far exceeds his ability to express his needs. Gross and fine motor skills are limited, and he requires one-to-one support in all areas of daily living. Though predominantly a wheelchair user, he walks with support in a walker and rides an adaptive bike at school.

Feeding was one of the earliest and most exhausting battles as Julie navigated Liam’s severe milk protein allergy, which led to Liam receiving a temporary nasogastric tube (NG Tube). She was told repeatedly that Liam was “failure to thrive” and urged to place a gastrostomy tube (G Tube), but Julie made the decision to persevere. After creative problem-solving (including feeding him from a salad dressing bottle) and relentless advocacy, Liam now enjoys orally eating French fries, pasta, vegetables and soft rotisserie chicken in addition to homemade purees. Food, once a battlefield, is now a celebration when they eat at restaurants or pull into a Wendy’s drive-thru.

After relocating from the Sarnia area to Oshawa, Liam’s care transitioned to Grandview Kids. Through Grandview Kids, Liam receives services for occupational therapy, physiotherapy (including equipment support and ankle-foot orthoses fittings), therapeutic recreation, developmental paediatric monitoring and Botox injections for spasticity through the Hypertonia Clinic. Alongside medical services, Liam and Julie have accessed social work (funding and school IEP assistance), the Extensive Needs Service for behavioural support and introduction to fun activities and events through the Family Engagement Program, emphasizing the importance of connection. Julie met other parents who understood the sleepless nights, the behaviour challenges and the medical overwhelm. This encouraged her to discover other community groups that further expanded that circle of support, turning isolation into global sisterhood.

Julie received Liam’s Down Syndrome diagnosis shortly after birth but did not have time to fully process it. “I was so in love with my baby and terrified of the immediate open-heart surgery and its implications that the diagnosis took a back seat.” She describes the diagnosis as “unexpected, scary and overwhelming, given the life I had envisioned for my child while I was pregnant. The relief I felt following his heart repair diminished any of the circumstances impending from having Down Syndrome. And it never took away from the love I felt for my son.”

If Julie could talk to herself on diagnosis day, she would encourage her to not listen to other people’s perceptions of Liam’s abilities and worth. “Simply love your child and believe in him. He will prove every single limitation placed on him to be inaccurate, and along the way, champion so many hearts.” Julie’s feelings about Liam’s future are mixed. She worries about supports when she is no longer here but she is also excited because she knows her son. “He is the epitome of unconditional love,” she says. “If everyone was like him, the world would be such a better place.”

Misconceptions about Down Syndrome that Julie wants to challenge

People with Down Syndrome are not “always happy.” They experience the full range of emotions.
It is not a disease and cannot be “cured.”
Life expectancy has more than doubled (now 60+ years).
Individuals with Down Syndrome often resemble their families more than each other.
Many can live independently and drive with support.
Many attend mainstream schools.
Women with Down Syndrome can have children.
They are more alike than different, defined by personality and passions and not diagnosis.
Individuals with Down Syndrome succeed in elite arenas:
- Monika Myers, Toronto-based professional international runway model
- Madison Tevlin, Canadian actress and broadcaster
- Kyle Land, Canadian competitive bodybuilder and certified personal trainer
- Ana Victoria Espino de Santiago from Mexico is a lawyer advocating for disability rights

Celebrating National Epilepsy Awareness Month and National Cerebral Palsy (CP) Awareness Month

Before Jaxon was ever held in their arms, Julie and Mike had already learned how fragile hope could be. After four pregnancy losses, Jaxon was born, followed by another miscarriage and the loss of a younger brother, Jameson. Jameson was born stillborn shortly after the halfway mark of pregnancy, but he will always be spoken of, remembered and included as part of their family. Jaxon proudly took on the title of “big brother” when their youngest family member, Eric, arrived. The road to building their family was marked by grief, but also by a deep sense of reverence and gratitude for the children they get to hold daily, kids who arrived through immense love and loss.

Julie’s pregnancy with Jaxon was healthy and normal, despite his traumatic and chaotic birth in September 2019. Jaxon became stuck in the birth canal, leading to an emergency C-section. He was not breathing and needed to be resuscitated, followed by eight days in the hospital’s neonatal intensive care unit (NICU). They were sent home, relieved but unaware of the journey awaiting them.

At four and a half months old, Julie noticed something that did not sit right. Jaxon was not using his right hand and babies were not supposed to show a clear preference that early. His paediatrician agreed it was odd and sent a referral for an MRI at The Hospital for Sick Children (SickKids). A week later, Jaxon began having strange body movements, his eye contact changed and he became constantly irritable and inconsolable. Julie still found herself questioning everything, wondering if she was failing as a mother. When Jaxon’s head drops began, they knew that something else was going on and a quick search on the Internet led them to “infantile spasms.” She read the phrase “catastrophic neurological emergency,” which is a condition that can cause permanent brain damage or death if not treated immediately.

Julie and Mike rushed Jaxon to SickKids, but as nothing happened in the emergency department, they were sent home. Once home, Jaxon’s head drops progressed significantly, going from a few episodes to hundreds within hours. Julie was able to record videos of these episodes, and they were back at SickKids. The videos and real-time episodes witnessed by SickKids staff were enough to take them seriously, but because electroencephalograms (EEGs) were not done at night, they were again sent home. Terrified and watching Jaxon, Julie dared not sleep, afraid that if she did, her worst fears would come true. The next day, an emergency EEG confirmed infantile spasms, and treatment began immediately with aggressive doses of two oral medications. Administering the awful-tasting medication every half hour to their young baby was very difficult to give and watch, but there was no choice as seizure control was everything.

Within a week, Jaxon had received three diagnoses: infantile spasms, epilepsy and cerebral palsy. An MRI confirmed a massive stroke on the left side of his brain, likely experienced during birth. Julie remembers the flood of guilt and grief as she replayed her pregnancy, wondering what she did wrong, wondering if she caused this. Although she acknowledges that these thoughts are baseless and untrue, they still visit her, even now. Jaxon spent months hospitalized at SickKids, and Julie was often alone because COVID-19 policies allowed only one parent per visit. The emotional, financial and physical costs added up quickly. Eventually, Jaxon achieved some seizure stability, and they allowed themselves to breathe for awhile.

During a follow-up appointment, brain surgery, specifically, a hemispherectomy was mentioned, almost casually. They had stability, and thought, surely this was not for them. The doctors explained the risk of Jaxon’s epilepsy. The damage was isolated to the left hemisphere so surgery could protect the rest of his brain should the seizures return and eliminate the risk of spreading to the right side of his brain, threatening even more of his development. The surgery would disconnect both sides of Jaxon’s brain and remove two-thirds of the damaged left hemisphere.

“It felt barbaric. Terrifying. Impossible,” recounts Julie. At just 18 months old, Julie and Mike made one of the hardest decisions imaginable. Epilepsy had already shown them how much it could steal so they chose the path that gave Jaxon the best chance at quality of life.

The surgery was a success but Jaxon unfortunately developed hydrocephalus, a condition where cerebrospinal fluid (CSF) pools in the brain’s ventricles, leading to increase pressure in the skull. He underwent five shunt revisions and contracted meningitis. He had two rehabilitation stays at Holland Bloorview Kids Rehabilitation Hospital, holding onto the hope that with the right supports and therapies in place, Jaxon could live a full, meaningful life.

Today, Jaxon is six years old. He is nonverbal, autistic and lives with epilepsy and right-sided spastic hemiplegia cerebral palsy. He uses an ankle-foot orthotic (AFO) on his right leg, a supramalleolar orthotic (SMO) on his left and a wheelchair for long distances and when he’s tired. His motivation to do things for himself, in his own way and time, has always been the driving force behind his progress. That determination carried him through years of therapy, using a walker, stander, and eventually, walking independently on this third birthday.

Jaxon’s family moved to Durham Region in 2023 to a home that they could modify for Jaxon’s long-term needs, a decision driven by advocacy to do everything possible to stack the odds in Jaxon’s favour. Jaxon’s care was transferred to Grandview Kids, where he receives physiotherapy, occupational therapy, speech-language pathology and therapeutic recreation. Therapy is not always easy, especially for a child who communicates differently, but progress happens because of the amazing therapists willing to meet him where he is.

Grandview Kids physiotherapist, Winnie W., stands out. Julie describes her as phenomenal, deeply intuitive and genuinely impactful because of her approach. Winnie played a key role in helping Jaxon make immense progress and access an adaptive bike for school and home use, giving him freedom of movement even in the winter months. Therapeutic Recreation groups gave Jaxon the opportunity to experience joy in social settings, which is often a struggle. In these groups, he is welcomed, accommodated and happy.

“When I first started working with Jaxon, he would be very upset when encouraged to try the physical activities. One day, we had a breakthrough with a piggy bank toy that made fake sneezing noises. He started laughing so hard whenever the pig sneezed. And from then on, he became an eager participant in every Physiotherapy session. There were no more tears, and he became more familiar with the routines of the session. Watching him improve in his physical skills and participation in sessions over the 2 years, it is rewarding to know the impact that has been made on his life.” – Winnie W., Grandview Kids Physiotherapist

Being nonverbal, Julie’s experience is that people underestimate Jaxon’s cognitive skills and understanding. Grandview Kids was instrumental in securing Jaxon a high-tech Augmentative and Alternative Communication (AAC) device. Julie had advocated alone for years, and through Grandview Kids’ referral, within a year Jaxon had a device that changed everything. Now, he can order his own meals at restaurants. He can show people what he knows and he is seen for who he truly is – a smart, capable, tech-loving kid who learns quickly, writes his name, uses his device for spelling tests and makes his own breakfast in the morning.

Grandview Kids has been a cornerstone of Jaxon’s growth. Julie says one of the most powerful things Grandview Kids has given their family is community. Family Engagement events like “Accessible Trick-or-Treating” at the Kids Safety Village of Durham Region remind them they are not alone. They are surrounded by families who understand, instinctively help when a child bolts toward a parking lot, help Jaxon up when he trips and look out for each other without explanation. “It’s a community no one asks to be part of, but you’re still grateful it exists.”

The daily reality of having a child with complex medical needs means Julie and Mike are hypervigilant, looking for signs of seizures or shunt malfunction. Jaxon cannot always tell them when something feels off so they make the best decisions they can, carrying heavy rocks they never chose to pick up. This included the tough decision for Julie to step back in her career as a child and youth worker and Mike to become the sole provider, working hard to not only provide the basic necessities of life but to ensure Jaxon could attend inclusive camp and pay for the yearly release of his communication device. They also learned to lean on their support system of advocates, including Jaxon’s respite worker, Olivia, who has become daughter-figure to them since Jaxon was one year old.

Yet Jaxon’s joy makes it worthwhile. He is affectionate, gentle and endlessly loving. His belly laugh is infectious, and his silliness brings smiles to everyone around. Julie says she would not change him for anything. She would change the suffering, fear, diagnoses, but never Jaxon himself.

Sharing Jaxon’s story has become part of their advocacy. Through a small TikTok platform, Julie has connected with hundreds of medical families. Some have recognized signs in their own children because of Jaxon’s videos and sought diagnoses sooner. “You don’t know what exists until it’s in front of you,” she says.

For Epilepsy and Cerebral Palsy Awareness Month, Julie hopes people understand that resilience does not mean being strong all the time. It means showing up anyway and making impossible decisions with love. It means re-choosing community, advocacy and hope. Their story, layered with loss, fear, advocacy and fierce love, is not a predictable path but is all woven together by the steady belief that Jaxon deserves every possible chance to live a full, meaningful life.

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.

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.

For Ankit and Mansi, Cochlear Implant Day is about celebrating technology, resilience, teamwork and the little girl who shows every day that differences can be powerful. With the right support, connection and care, Ahaana is not just hearing the world; she has also found a voice to help make it a more inclusive, compassionate place for everyone.