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Every Child And Youth Living Life At Their Full Potential

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Defying expectations: Adaline’s journey with Wolf-Hirschhorn Syndrome

Family Engagement

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.  

Cassandra never imagined how many turns her family’s journey would take, but loving her son, Brock, has taught her resilience, creativity and fierce advocacy. Brock is nearly 13 years old and lives with complex medical needs, including hydrocephalus with a ventriculoperitoneal (VP) shunt, cerebral palsy, chronic kidney disease, autism spectrum disorder, intellectual disability, developmental delay and a neurogenic bladder that requires catheterization. He lives at home with his mom, Cassandra, his sister, Olive, his grandma and his stepdad. They face each day together as his tight-knit care team.

Before 2019, Brock ate and drank by mouth. Then a life-changing fall down 13 steps caused a brain bleed, and Brock slowly lost the ability and desire to eat. His weight dropped to dangerous levels, and Cassandra knew something had to change. Choosing a feeding tube was not easy, but it became necessary when Brock stopped gaining weight altogether. The feeding tube became a lifeline.

The learning curve was steep. Cassandra became the only one trained to manage Brock’s pump and tube changes, while also teaching others how to care for him, since in-home nursing was not an option. The cost of equipment added constant stress, even with assistance programs, and emergencies often meant long trips to The Hospital for Sick Children (SickKids) because local hospitals were not trained to manage paediatric feeding tubes. There were unexpected challenges too, like Brock learning how to open his feeding line mid-feed, or discovering that their travel backpack blocked the tubing, leading the family to invest in intravenous (IV) poles and multiple pumps so Brock could move freely at home and out in the community.

Despite the hurdles, the feeding tube changed Brock’s life for the better. He is now gaining weight appropriately and has more energy to enjoy the things he loves, just like any child. These include camping with his family, attending Scouts, playing soccer, riding his bike in the summer, watching Peppa Pig and lining up his dinky cars. Grandview Kids has been a constant source of support for Brock and his sister as they have accessed services, including occupational therapy, physiotherapy, speech-language pathology, the Complex Care Program, therapeutic recreation and dietitian support to ensure Brock gets the nutrition and fluids his body needs.

Cassandra’s message during Feeding Tube Awareness Week is one of honesty and hope. She advises caregivers and parents exploring the use of a feeding tube to ask questions, explore all tube options, seek out community resources and not to let fear or doubt stop them from choosing something that can help their child thrive. “You don’t have to do it alone,” Cassandra emphasizes. “If challenges arise, reach out to hospital g-tube teams, members of your family and others in the Grandview Kids community who understand.” Brock’s feeding tube is not a limitation; it is a part of the reason he continues to grow, explore and be exactly who he is.

Learn more about the Family Engagement Team

If you want to connect with others in the Grandview Kids community, reach out to a Peer Navigator on our Family Engagement Team (FET) to start fostering those relationships and gain additional support from peers. You can meet someone from the FET in the Family Resource Centre at Grandview Kids’ Ajax-based headquarters, The Jerry Coughlan Building, Monday through Friday, from 9 a.m. to 2 p.m. 

For more information, email the team at familyengagement@grandviewkids.ca or join the Grandview Kids’ Online Parent Support page to make connections and learn about all upcoming events. 

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