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Every Child And Youth Living Life At Their Full Potential

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The power of unconditional love: Liam’s journey

Awareness Days

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  

Each month, the Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee highlights dates of significance. These may include religious observances, clinical and medical awareness dates, important events or other significant moments within the community. See below for a broader list of additional dates of significance.

In March, we acknowledge Holi, Neurodiversity Celebration Week, Eid Al-Fitr, Earth Hour, Transgender Day of Visibility and National Indigenous Languages Day. Below, read more about each date of significance, written by members of our IDEA Committee.

Holi: March 4

Holi is a joyful celebration of colour observed by Hindus around the world. The festival heralds the end of winter and marks the beginning of spring. It is celebrated on the last full moon in the lunar month of Phalguna, which usually occurs in March. The time not only symbolizes a new season but also represents new beginnings for Hindus. It is often a time to end conflicts and let go of emotional baggage. The celebration also honours the triumph of good over evil.

Holi is normally a two-day celebration. The day before is known as “Jalane wali Holi” or “Holika dahan,” the day Holika burned. People celebrate by having their own bonfires in the neighbourhood. The morning after is called “Rangwali Holi,” the day of colour. That is the main day of the festival. Families and neighbours get together on the streets, throw powdered colour and liquid dye at each other, sing and enjoy. These coloured powders have special meaning: red dye symbolizes love, blue represents the Hindu god Krishna, and green stands for new beginnings.

The food is also fun and colourful. Finger foods are most popular since they can be eaten even with colour-smeared hands and face. The most popular sweet is Gujiya, a fried and sweetened empanada-like pastry stuffed with dried fruits and nuts.

Neurodiversity Celebration Week: March 16 to 20

March 16 to 20 is Neurodivergent Celebration Week! This week is a time to challenge the stereotypes and misconceptions that are often associated with being neurodivergent. It is also a time for people to celebrate the beauty of different ways of thinking and experiencing the world.

Neurodivergence, or neurodiversity, refers to the neurological differences that can be found in some people’s brains. Some examples of neurodiversity are dyspraxia, autism, ADHD, and dyscalculia. With different brains and ways of thinking come unique strengths and challenges. Often, environments and systems are not set up for neurodivergent people in ways that support their ways of learning and processing.

Neurodiversity might be a term that has come up more recently, but it is not a trend. Increasing understanding of how people’s brains work and what different people need allows more people to be successful in their lives. Neurodiversity is not something that is outgrown or “cured.” However, the support and coping skills that are needed may vary over a person’s life span.

Neurodivergence is often diagnosed in children. However, for many reasons, a diagnosis might not happen until adulthood. Some people are never officially diagnosed. Stigma, access to assessments, cultural understanding of differences, and financial challenges contribute to someone not being diagnosed.

At Grandview Kids, we strive to provide neuro-affirming services to both clients and their families by learning from the individuals that we work with and approaching treatment and interactions as opportunities to learn together. Happy Neurodiversity Celebration Week!

Eid Al-Fitr: March 19 or 20 (based on the moon)

Eid Al‑Fitr, often shortened to Eid, is a joyful celebration observed by Muslims around the world to mark the end of Ramadan, a month devoted to fasting, reflection, prayer and community. The celebration begins with the sighting of the new moon, so its date can vary by region. Many families start the day with a special morning prayer, then visit loved ones, share meals and sweets, exchange gifts and greet one another with “Eid Mubarak,” meaning “Blessed Eid.” Many families take the day off work or postpone appointments when possible so they can enjoy the celebrations.

A core value of Eid Al‑Fitr is generosity. Zakat al‑Fitr is given by Muslims, a charitable contribution meant to ensure everyone can take part in the festivities, including those facing financial hardship. Eid is also a time to strengthen relationships, heal misunderstandings, reaffirm moral values and extend kindness throughout the community.

At Grandview Kids, recognizing awareness moments like Eid reflects a commitment to inclusion, dignity and family‑centred care. The children and families we support come from diverse cultural, linguistic and faith backgrounds—identities that often influence how families build community, cope with stress and find joy during challenging seasons of care. Small gestures, such as asking families whether cultural or faith considerations may help us support them better, contribute to an environment where everyone feels respected and understood.

Awareness isn’t about everyone celebrating the holiday; it’s about making space for one another. Eid Mubarak to all Grandview Kids families, staff and community members who are celebrating.

Earth Hour: March 28

March 28 marks Earth Hour, a time when millions of people across Canada and around the world turn off their lights for one hour to show their commitment to protecting the planet. What began in 2007 as a symbolic event in Sydney, Australia, has grown into a global movement, engaging communities, businesses and individuals in over 190 countries. Earth Hour is more than just an hour without electricity; it is a call to action, raising awareness about climate change, energy use and the urgent need for sustainable practices.

The significance of Earth Hour lies in its ability to bring people together for a common cause. When households, landmarks and businesses switch off their lights, it sends a visible message of solidarity, showing that collective action can make a difference. Beyond the symbolic act, Earth Hour encourages Canadians to reflect on how daily choices affect the environment and to adopt long-term sustainable habits.

Earth Hour is also a chance to reconnect with nature, whether by spending time outdoors, appreciating the night sky or reducing energy use. It reminds us that every action matters and that Canadians can contribute to a healthier, more sustainable future for generations to come.

Transgender Day of Visibility: March 31

March 31 marks Transgender Day of Visibility, a day to celebrate transgender, non-binary and gender-diverse people across Canada and around the world. The day was founded in 2009 by transgender activist Rachel Crandall to recognize the achievements, contributions and resilience of trans communities while raising awareness of the challenges they face. Unlike Transgender Day of Remembrance, which honours lives lost to violence, this day focuses on visibility, empowerment and recognition. It is a chance to affirm trans identities, challenge stigma and promote understanding in families, schools and communities.

Visibility is important because transgender and non-binary people often experience discrimination, exclusion and misunderstanding. Acknowledging their presence and contributions is a step toward creating safer, more inclusive spaces where all children, youth and families can feel seen and respected. At Grandview Kids, we are committed to being allies by listening to our clients, using affirming language and celebrating diversity in gender identity.

By fostering inclusion, raising awareness and modelling respect, we can help create a community where every child has the opportunity to thrive and be proud of who they are. Visibility matters, and allyship makes it stronger.

National Indigenous Languages Day: March 31

On March 31, we celebrate the 33rd National Indigenous Languages Day, created by the Assembly of First Nations in 1989 and first observed in 1993. The goal of this day is to raise awareness of and build support for the preservation of Indigenous languages across Canada.

There are 64 Indigenous languages spoken across the country, some of which are at risk of extinction. Dedicated advocates have long fought and continue to fight to preserve and revitalize these valuable languages. Below, join us in celebrating their efforts as we recognize and reflect on what the residential school system and colonization threatened to erase: the diverse and beautiful languages that form the founding fabric of our nation.

  • Sol Mamakwa: Sol Mamakwa, NDP Member of Provincial Parliament (MPP) and the only First Nations legislator in the province addressed Queen’s Park in Anishinaabemowin in May 2024, making history. It was the first time an Indigenous language, or any language other than English or French, had been used by officials in the legislature. Sol emphasized that protecting Indigenous languages is central to identity and being a person.  
  • Dr. Ronald Ignace: Dr. Ronald Ignace has been a driving force in the revitalization and protection of Indigenous languages and was the first appointed Commissioner of Indigenous Languages for Canada. His dedication, expertise, academic background in anthropology and sociology, and lived experience earned him the 2019 Governor General’s Innovation Award and the 2024 Inspire Language Award.
  • Gord Downie: Gord’s advocacy to improve the lives of Indigenous Canadians was inspired by the story of Chanie Wenjack, who died in 1966 trying to return home from a residential school. His call to build a better Canada led to the creation of the Gord Downie & Chanie Wenjack Fund, aimed at fostering cultural understanding and promoting reconciliation between Indigenous and non-Indigenous peoples. In June 2017, he was appointed to the Order of Canada for his work in Indigenous rights advocacy.
  • Robert-Falcon Ouellette: Robert-Falcon Ouellette twice made history, achieving milestones in Indigenous languages advocacy. As a Cree member of Parliament, he helped establish standing orders allowing Indigenous languages to be fully translated in the House of Commons and delivered a speech in Cree on January 28, 2019. He was also the first Indigenous knowledge keeper in the Canadian Armed Forces, where he served 29 years, and became the first Indigenous chaplain in 2025. Today, Ouellette continues his advocacy as an associate professor at the University of Ottawa in Indigenous education and serves as director of the French teacher education programs.

Other dates of significance in March:

  • Irish Heritage Month
  • National Epilepsy Awareness Month
  • National Cerebral Palsy Awareness Month
  • Juvenile Arthritis Awareness Month
  • International Wheelchair Day: March 1
  • World Teen Mental Wellness Day: March 2
  • World Hearing Day: March 3
  • World Birth Defects Day: March 3
  • International Women’s Day: March 8
  • International Day to Combat Islamophobia: March 16
  • Laylat al Qadr: March 16
  • St. Patrick’s Day: March 17
  • National Trisomy 18 Awareness Day: March 18
  • Lent: March 18 to April 2
  • St. Joseph’s Day: March 19
  • Nowruz: March 20
  • International Day for the Elimination of Racial Discrimination: March 21
  • World Down Syndrome Day: March 21
  • National Cerebral Palsy Awareness Day: March 25

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.  

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

12-year-old Lorenzo is warm, welcoming and engaging in his own way. Though he is nonverbal, he communicates clearly. He shows interest through his eyes and energy and demonstrates displeasure by pushing an object away or disengaging. He is an extremely happy preteen who still loves to cuddle when he is in the mood and not in pain. Lorenzo lives with his mom, Melecia, and his grandmother, who recently began helping with his care. As a family, they treasure simple moments such as car rides, trips to the mall, watching movies and spending time outdoors. Lorenzo also loves cartoons, for their bright colours and fast movement and riding his adaptive tricycle when the weather allows. 

At two months old, Melecia noticed Lorenzo lying in his bassinet, staring steadily at one side. “It didn’t look right,” Melecia recalls, “So I told our family doctor about it. He said to bring Lorenzo to the emergency department if it recurred, which I did.”  That moment marked the beginning of a long and unpredictable medical journey. Lorenzo was experiencing difficult-to-control seizures and although medications were introduced, they did not bring meaningful improvement.  

Monitoring, testing and sleepless nights turned the hospital into a second home. At The Hospital for Sick Children (SickKids), doctors conducted extensive investigations, including genetic testing. They identified a rare mutation in the KCTN1 gene, a mutation that occurs at conception. Lorenzo was first diagnosed with infantile spasms and later with malignant migrating focal seizures in infancy, a severe and rare form of epilepsy. 

For Melecia, the diagnosis felt surreal. During her pregnancy, she did all that she could to stay healthy, and Lorenzo was born full-term. There was a sense of disbelief; surely something could “fix” this. Melecia learned that epilepsy, especially rare genetic epilepsy, rarely follows a straight line. Brain surgery was not an option because seizure activity affected both sides of Lorenzo’s brain. Instead, doctors focused on medication to calm the electrical misfiring. He tried countless treatments, but eventually, he required a complex combination of medications, including pharmaceutical-grade CBD oil and a strict ketogenic diet. 

The ketogenic diet demanded exact precision, with every ingredient weighed and every ounce mattered. Melecia followed instructions meticulously, determined to do her part while doctors did theirs. The diet reduced seizure activity for a time, but it also took a toll. Long-term restrictions led to fragile bones from calcium deficiency, leading to the difficult decision to pause the diet and slowly rely on a concoction of medications. Like much of Lorenzo’s care, treatment required constant re-balancing. Now entering adolescence, Lorenzo’s seizures are changing again. Hormonal shifts have increased their frequency, and they look different than before. They are not back-to-back emergencies, but they remain unpredictable. 

The impact of uncontrolled seizures in infancy was profound. During critical stages of brain development, repeated seizure activity altered Lorenzo’s developmental path. He was later diagnosed with Level 5 cerebral palsy, cortical visual impairment (CVI) and global developmental delay. Caring for Lorenzo demands constant vigilance as he requires assistance with all daily activities, managed solely by Melecia. Nights can be sleepless as Lorenzo sleeps beside her to monitor if no nurse is available. Every seizure is tracked, and medication is carefully timed. Feeding adds a further layer of complexity as Lorenzo uses both oral feeds and a gastrotomy tube (G-tube). Lorenzo also uses many devices and equipment, including ankle-foot orthoses (AFOs), a manual wheelchair, a stander, a walker and, at one time, a lift. 

Melecia attests that she was thankful she did not have to do it alone, especially in their early, confusing days. SickKids connected the family with Grandview Kids, opening the door to vital services such as occupational therapy, physiotherapy and speech-language pathology. Lorenzo is part of the Durham Region Complex Care Program, delivered in partnership between SickKids, Grandview Kids, Lakeridge Health and Ontario Health at Home, Central East. Having appointments organized locally has eased much of the logistical burden and ensures continuity of care with each team member informed at every point of Lorenzo’s journey. 

Melecia notes that being able to receive social work services through Grandview Kids has been especially meaningful. “Sometimes just having someone to talk to and being connected with other Grandview Kids parents (with their consent) has been a gamechanger.” Being connected to other Grandview Kids families has provided insight, encouragement and community. “At one point, I was a bus driver and was assigned a route with a Grandview child on the bus. It felt so rewarding knowing that I was taking care of a Grandview friend’s child and confidently caring for them as they were my own.” Through Lorenzo, Melecia learned the need for reciprocity in community, knowing when to give and take assistance. 

Still, the weight of caregiving remains heavy, especially when your child is completely dependent due to seizures and profound physical limitations. “You know you’re doing enough, but it’s still never enough,” Melecia reflects. There is always more to research, monitor and manage. Early on in their journey, she made a conscious decision not to lose herself. Shortly after Lorenzo’s diagnosis, she returned to weight training and cardio. What began as physical conditioning became something deeper. “I have to be strong for my son,” she says. “I want him to know that he’ll never outgrow my lap.” As Lorenzo grows, lifting and transferring him safely requires strength. To her surprise, building physical strength also strengthened her mentally. The gym became her outlet, the place where she processed both good and bad news. “I run for me,” she explains, “so that whenever something happens, I know how to handle it.” 

Lorenzo’s life is complex, shaped by seizures and significant physical disability. Yet it is also filled with joy through bright cartoons, busy public spaces, fresh air and family connection. As a medical parent, self-care became essential to Melecia, not optional. She encourages other parents to invest in themselves now, building resilience for the years ahead. Physical and mental strength, she believes, create the foundation needed to weather uncertainty.  

She lives by this belief: people may give up on you, but you dare not give up on yourself.  

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.  

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