Stories

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

On a gloomy winter morning in Winnipeg, with clouds hanging low and snow clinging stubbornly to the ground, Vince and Michelle brought their two-and-a-half-month-old daughter, Ayla, to The Children’s Hospital of Winnipeg emergency department. They arrived at 9 a.m., but by the time they returned home at 4 p.m., their lives had changed forever.

Michelle observed that Ayla was having unusual, repetitive body movements. At first, Michelle wondered if these clustered small spasms were simply the newborn startle reflex. Days later, Vince noticed the same movements, and together they searched online looking for answers. They immediately found articles on and videos of infantile spasms that looked exactly like what they were seeing. Over the next few days, they took videos of Ayla’s twitching, which were sporadic and unpredictable. Trusting their instincts and with evidence in hand, they went straight to the hospital. Within the hour, a paediatric neurologist saw the videos and observed Ayla’s spasms in real time. Testing began immediately, infantile spasms were strongly suspected and treatment began that same week.

Ayla’s epilepsy journey has been anything but straightforward. Over time, she was diagnosed with drug-resistant epilepsy, requiring multiple medication trials. Today, she takes three medications and additional supplements to help manage both large seizures and smaller spasms, which is a delicate balance achieved only through persistence, advocacy and constant reassessment. As Ayla grew, further diagnoses followed, including global developmental delay and cortical visual impairment. Developmentally, she remains at an early infancy level. She does not sit independently, crawl or stand, and feeding requires full support. Despite consistent therapy, her brain struggles to retain what her body practices – a reality many families living with neurological conditions know all too well.

At the time of Ayla’s diagnosis, her parents were just beginning to find their footing as new parents. Vince, a meticulous planner, signed them up to take every baby class available. They were attending webinars and in-person classes every other weekend. The pregnancy had been normal with no indication that medical challenges lay ahead. They learned that no amount of preparation can ready you for life’s curveballs. Learning how to administer seizure medication to a tiny infant, often by syringe, while navigating sleep deprivation, fear and uncertainty was overwhelming. Emotionally, it marked the beginning of life as “medical parents,” a role they never anticipated.

Michelle carried a heavy sense of guilt, questioning whether she could have done something differently during pregnancy or delivery, an inevitable but impossible question to answer. Over time, they learned that two things can be true at once: deep gratitude for their daughter, Ayla, and grief for the motherhood and parenthood they once imagined. Both feelings are valid, but sitting with the latter for too long would dim the former.

After more than a year of treatment and therapy in Winnipeg, Ayla’s medical team felt they had exhausted all local options. Conversations turned to advanced epilepsy care, including possible surgical interventions and the need for broader, specialized supports. With encouragement from family and a strong partnership with their Winnipeg-based care team, the decision was made to pursue care in Ontario. Leaving behind a settled life with established careers, family and home was not easy, but advocating for Ayla meant doing what was best for her future. Ontario offered expanded epilepsy expertise, specialized paediatric care and access to a wider network of supports. Thankfully, Vince’s parents had relocated to Ajax, Ontario, 15 years ago, and welcomed their family and 16-year-old dog, Mikka, into their home during this transitional period in the summer of 2025.

One sunny day, while driving in Ajax, Ayla’s mom noticed a large, colourful building and asked herself, “What is that place?” That building was Grandview Kids. She searched the internet, and after learning more, told Vince, “Ayla needs to be here.” The family self-referred, and soon after, Ayla qualified to begin receiving services.

From the moment they walked through the doors, they felt welcomed. The inclusive environment, the warmth of the space and the family-centred approach made an immediate impression. For a family new to Ontario and still feeling like “new parents,” Grandview Kids offered something deeply meaningful: a sense of belonging.

Today, Ayla is 2 years old and receives physiotherapy, occupational therapy and speech-language pathology services, along with feeding clinic support at Grandview Kids. As they wait for a developmental paediatrician and equipment funding, they are assured by therapists that they are on the right track. Each appointment feels like a step forward, not just in care, but in confidence. Just as importantly, the family is beginning to connect with other Grandview Kids families who truly understand the realities of epilepsy and complex medical needs.

When Michelle thinks about Ayla’s future, she feels a mix of emotions, like hope, fear, excitement and uncertainty. Will Ayla walk? What will school look like? How independent will she be? As she reflects, one thought stands out. “When you’re a parent, you prepare your child to not need you someday, but you’re never prepared for the possibility that they might need you for the rest of their life.” And yet, there is hope. Seizures are better managed, supports are in place and Ayla is surrounded by a team and a community that sees her potential.

During National Epilepsy Awareness Month, Ayla’s family wants other parents and caregivers to know that they need to trust their instincts, ask questions, follow up and push for answers and supports, even in the face of pushback or doubt. You are your child’s strongest advocate.

They also encourage families to meet their child where they are at. Inchstones and milestones look different for every child, especially for those with physical, communication and developmental needs. “If you find yourself comparing your journey to others, always remember to find the glimmers among what can feel like so many triggers.” Epilepsy is not a straight path, as treatment takes time and decisions are complex.

With the right supports, compassionate care and a community like Grandview Kids, families do not have to walk this journey alone.

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.

Celebrating Black History Month!

A few years ago, when my child was six-years-old, we walked into a clinical office (not affiliated with Grandview Kids). He was happily flapping his hands, ready to get started with his Alternative and Augmentative Communication (AAC) device for the first time. The professional we were meeting with flinched. I was confused because she worked with disabled children who stim all the time. “Let’s relax a little,” she said and pushed out a laugh. “Does he get angry like this a lot?” she asked. I looked at my son. He was calm. He was just happily flapping and vocalizing, like I had seen many other autistic children do. She pulled away from us at the table. “He won’t hit you,” I said calmly, and she reacted positively to my reassurance. I realized that she was afraid of him. Our appointment went on as I had originally expected, but I left feeling confused.

After pondering “why” I felt so uneasy about our interaction, I remembered some research that explained my experience. I realized that my son had experienced a microaggression. This professional most likely had experience dealing with white autistic children, but my son is Black. She may not even have been conscious that she was doing it, but the effects of her posture, tone and questions lingered. It took me years to articulate how she made me feel during that appointment. In reality, Black children are perceived as angry, more often than white children (Halberstadt et al., 2020). This is an implicit bias.

I am privileged to have a front row seat to the lives of my three sweet, hilarious and determined Black autistic children, each with varying support needs. I try to take every opportunity to celebrate our different disabilities. On one hand, there is joy in this journey. On the other hand, there are also difficulties placed on them by society, simply because they are disabled. This is ableism. In addition to living in a world where others may not understand their disabilities, we also live in a world where people view my children as angry because they are Black. This is racism.

Black History Month is exciting because we get to publicly celebrate all the joyful things about being Black. It is also an opportunity to highlight the difficulties that have been placed on us by society, simply because we are Black. Just as we must all learn to look at our biases towards the disabled community, we must also look at our biases towards the Black community. Being Black and disabled is a unique, intersectional experience that is often overlooked and dismissed. I challenge us to dismantle ableism and racism, especially this month. I cannot wait to see the impact that my children will have in the world, equipped with the knowledge that they are valuable regardless of their abilities but also because they are Black.

Summary: https://www.apa.org/news/press/releases/2020/07/racialized-anger-bias

Article sourced: “Racialized Emotion Recognition Accuracy and Anger Bias of Children’s Faces,” by Amy G. Halberstadt, PhD, Alison N. Cooke, PhD, Dejah Oertwig, MA, and Shevaun D. Neupert, PhD, North Carolina State University; Sherick Hughes, PhD, University of North Carolina-Chapel Hill; and Pamela W. Garner, PhD, George Mason University, Emotion, published online July 2, 2020.

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.

Jack is a bright, determined three-and-a-half-year-old whose smile and spirit often arrive before his words do. To those who know him, Jack is a fighter, a leader and a little light guiding everyone around him forward, one hard-earned step at a time. His parents, Olivia and Matt, and loving grandmothers, Julie and Michelle, work hard together to raise Jack, but truly believe that he is the one teaching them to grow in unimaginable ways.

At seven months old, Jack suffered damage after a viral illness (COVID-19), causing him to lose his ability to sit, army crawl, roll and grasp objects, essentially leaving him in paralysis for several months before he miraculously recovered. His muscle tone was affected, and his body seemed to shut down in ways no one could explain. For months, Jack and his family cycled through neurology, genetics and paediatric teams at The Hospital for Sick Children (SickKids) and Holland Bloorview Rehabilitation Centre, searching for answers. Without a diagnosis, his parents did what they could to support his gross motor skill development through physiotherapy, occupational therapy and constant advocacy, all the while grappling with the fear of not knowing what Jack truly needed.

Just as Jack began home daycare when Olivia returned to work, his care provider noticed concerning symptoms. Jack began shaking and growing increasingly lethargic. What followed was lifesaving. Jack fainted at daycare and was rushed to the hospital. That moment led to the discovery that Jack had initially suffered a metabolic stroke and now had suffered a second.

At 23 months old, after immense advocacy and support from his medical team at SickKids and Health Canada, Jack was diagnosed with Pyruvate Dehydrogenase Complex Deficiency (PDCD), a rare metabolic condition that prevents the body from properly converting carbohydrates or sugar into energy. The condition is so rare that most children, particularly boys, do not survive infancy. By the time of his diagnosis, Jack was severely hypotonic and required a ventilator and a gastrostomy tube (G-tube). His brain and organs were not receiving the energy they needed to properly function. The diagnosis was both devastating and relieving, terrifying in its implications, but lifesaving in its timing.

Treatment began immediately. Jack was placed on a strict ketogenic diet, carefully measured down to every gram of fat, protein and carbohydrate. He takes over 20 supplements daily, including thiamine, and undergoes regular monitoring to ensure his body remains in balance. It’s a complex and demanding routine, but it gave Jack a chance. It did make it difficult to find a new daycare provider that was comfortable with Jack’s medical needs, interviewing about 12 different providers. This stress was alleviated when they met Angela, who reassured them of her involvement and care, treating Jack as one of her own and becoming part of their family.

Today, after a year on the ketogenic diet, Jack is walking with a walker, communicating and engaging with the world in his own determined way. His fine motor skills are strong, his personality shines, and although every movement requires immense effort, Jack shows up ready to try.

Throughout his recovery, Grandview Kids has been a cornerstone of support for Jack and his family.

Referred through SickKids after his initial metabolic stroke, Jack began receiving physiotherapy, occupational therapy and speech-language pathology services at Grandview Kids, even before his diagnosis. His therapists stood beside the family at their lowest points, helping Jack relearn how to sit, crawl, stand, walk and communicate.

“Grandview Kids was there before we had answers. They saw us at our worst, and they helped carry us through.” – Olivia, Jack’s mom

Jack’s therapists also guided the family through equipment needs like standers and orthotics, supported transitions with daycare and connected them to vital resources when the path forward felt impossible to navigate. More than providers, they became trusted partners, a second family walking alongside them.

Life with a rare disease means living without certainty. Jack’s future remains unknown, but his family takes it one day at a time. They advocate fiercely, lean on their village, including grandparents, medical teams, daycare providers and Grandview Kids, but ultimately follow Jack’s lead.

“Jack has changed all of our lives for the better,” Olivia says. “He’s teaching us patience, compassion and strength. He works ten times harder than anyone else just to take a single step. And he keeps going.”

Celebrating Black History Month!

Throughout his recovery, Grandview Kids has been a cornerstone of support for Jack and his family.

Home is where the care is: National Epilepsy Awareness Month

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