Stories

June 23 is International Dravet Syndrome Awareness Day. This day gives families affected by Dravet Syndrome a chance to share stories, build support and increase public knowledge about this rare form of childhood epilepsy. This syndrome is associated with a genetic mutation, primarily in the SCN1A gene, a sodium channel receptor. Dravet Syndrome is a spectrum, affecting individuals with different outcomes depending on gene mutation. Classic signs and symptoms include children presenting with the onset of seizures before their first birthday, with long-lasting initial seizures, often triggered by illness. Individuals with Dravet Syndrome are diagnosed through genetic testing that observes sodium channel levels. Grandview Kids’ Peer Navigator, Jacki N., shares her family’s journey as they navigate life with Dravet Syndrome.

13-year-old Colton lives with his parents, Jacki and Chris, older brother Treston and younger siblings Jaxon and Adelaide. They enjoy travelling, watching and playing sports and birdwatching, which gives them a purpose to go on many family walks and hikes. Colton loves all sports, particularly watching hockey, baseball and soccer, the latter of which he plays. He is also fond of playing video games with his brothers, is fascinated with bubbles, loves watching Toopy and Binoo and is always ready for an adventure. Although Colton has a sweet and easy-going personality, he is also quite persistent, preferring to stick to his known routines and schedules, even after rough days or nights of experiencing multiple seizures.

Colton was diagnosed with Dravet Syndrome in April 2013, a year after his first seizure. As expected with Dravet Syndrome, he was later given a formal diagnosis of global developmental delay. Receiving the Dravet Syndrome diagnosis was an unexpected and initial shock to his parents. Later that evening, Jacki vividly recalls giving Colton a bath and looking at him, thinking “[the diagnosis] doesn’t change him; this is who Colton is,” immediately transitioning to acceptance, which they recognize can be a challenging step for parents and caregivers. Within a few weeks, Jacki began to realize the importance of receiving a formal diagnosis as it opened doors to education, treatment and connection with other families to help understand the nuances of Dravet Syndrome. “Receiving a diagnosis was more helpful than not receiving one,” as she was able to focus her research on sodium channel levels for controlling and stopping seizures.

Seizure treatment and management for those living with Dravet Syndrome typically include a ketogenic diet, cannabidiol (CBD), which is used to significantly decrease seizure activity, pharmaceutical medications and, often, as a last resort, vagus nerve stimulation (VNS). VNS is an implanted device that sends mild electrical pulses through the vagus nerve to the brain to alter nerve activity and stop seizures. Jacki’s family quickly learned about Colton’s heat trigger, a commonality among those with Dravet Syndrome, prompting them to order a cooling vest. They also initially received pushback from their medical team on a treatment plan. However, the diagnosis gave them clearance to put Colton on a ketogenic diet, which has been highly effective for his seizure management. Making necessary adjustments to his diet, such as removing fruits at dinner to increase Ketone levels or taking supplements, has proven that even minor but tailored changes are helpful.

Accessing medications currently being researched is a vital intervention for chronic illnesses like Dravet Syndrome, but they are not without risks. Colton was on a 5-year-long trial medication that required the consumption of 14 pills daily. Unfortunately, the trial medication was not approved, and he required weaning from this essential medication. This lengthy process of medication weaning over six months proved to be a challenge, especially when weaning off the last two pills, prompting approximately ten seizures a night. Although he is not back to baseline, the slow weaning process and dietary changes helped decrease the seizures to only one 30-second seizure a night.

Losing seizure control and having to administer rescue medication is frightening. “We can’t give him rescue medication every night, or else we should be in the hospital,” Jacki says. If Colton has a bad night, he must likely recover at home the next day by sitting and resting. When deciding to participate in a research trial, you must be prepared to lose control over anything related to the medication. “We cannot tweak doses and are at the mercy of those running the trial and the supplier. We depend on funding and adequate results.” Jacki also shares that Canada is behind Europe and the U.S. in trials, research and development, so even if the medication works and is approved, there may be insufficient healthcare coverage for the costs after trial completion.

Although most treatments aim to reduce the frequency of seizures, they do not address other effects of the disease and seizure control remains a challenge for the majority of those with Dravet Syndrome. Colton can walk short distances in the home and community but uses a paediatric stroller for longer distances. He can also communicate his needs and wants with few words and his body language, but the effects of his seizures are significant and long-lasting.

Grandview Kids has been part of Colton’s journey since the beginning. His family are active members of the Grandview Kids community, being members of the Family Advisory Council (FAC), Youth Advisory Council (YAC) and Family Engagement Team (FET) over the years. Colton has received necessary support through Grandview Kids’ medical, therapy and social work services. “Of all the support I received, Grandview Kids was the most impactful,” Jacki shares. “We would always go to different events since seeing other families like mine, although experiencing different problems, because it made me feel like I wasn’t alone.” Through these connections, resources and information were freely shared, introducing Colton to Challenger Baseball, inclusive programming and soccer. Jacki appreciates how Colton and her other kids would see familiar faces, feel welcomed and be exposed to children with all types of skills and abilities. She emphasizes the importance of getting involved in attending Grandview Kids events, especially those hosted by the FET. “I didn’t always want to attend, but I would always leave better,” challenging other parents and caregivers to make the time to foster community, connection and belonging.

The Complex Care Program celebrates its fourth anniversary of providing care to more than 75 children and youth with complex medical needs living in the Durham Region since its launch in May 2021. This clinic is specifically tailored for children and youth with significant health complexities that often require frequent hospitalizations, involve multiple healthcare specialists and need extensive medical care. Many children and youth who access this program depend on technological support for essential daily functions like mobility, feeding and breathing. In partnership with SickKids Hospital, Lakeridge Health and the Ontario Health at Home Central East, the clinic’s goal is to deliver coordinated care closer to home.

Grandview Kids’ Complex Care (CC) Program serves children of diverse medical complexities, demographics and ages. 18-year-old Rhys is a recent CC graduate. He was born prematurely at 29 weeks gestation age and has several diagnoses, including Cerebral Palsy (CP), chronic lung disease, severe scoliosis and kyphosis, a tracheotomy (trach) and gastrostomy tube (G-Tube), is non-verbal and uses a wheelchair. He is completely dependent on nursing and parental care, requiring round-the-clock total support. Despite his struggles, Rhys is described as a consistently happy and excitable teen who loves to laugh, listen to music and watch action shows. His mom, Becky, shares how participating in the CC Program transformed their journey of fear and isolation into a story of belonging, connection and celebration.

Rhys’ journey began differently from most preemies with a good Apgar score (a system doctors and nurses use to assess newborns after birth). His lungs, however, became easily fatigued, and every attempt to extubate him would result in him coding (a situation where a patient experiences a critical medical emergency, pertaining to cardiac arrest or respiratory failure) because his throat would close, causing further brain damage. He remained in the hospital for the first nine months of his life and was later diagnosed with CP when he was 1.5 years old.

Hopeful of the promises of early intervention, Becky did everything she could for Rhys in those early years, as she did not work to be able to take him to ability camps and optimize the abilities he had. Regrettably, Rhys lost many of his skills over the years due to resuscitation events, which happened every time his trach was removed. He could no longer swallow food, make verbal noises or use sign language. It was a terrifying time for both Becky and Rhys, whose awareness of these incidents increased over time. Thankfully, Rhys was able to undergo airway reconstruction in 2020, so accidental trach removal is less scary since he will not code. He knows he will be able to breathe again because he is on a ventilator.

Over the years, more disciplines at SickKids Hospital needed to be part of Rhys’ medical care. Sometimes the care plan did not always connect, leaving Rhys’ parents confused, especially in the beginning, as no one could provide a solid diagnosis or prognosis. The appointments were inconsistent, not on the same days and required careful full-day planning as Rhys’ family would always need a second trained caregiver to assist with transfers and travel from Bowmanville to downtown Toronto. These frequent hospital visits were also a financial burden as expenses accumulated through parking, gas and purchasing food.

Joining the Grandview Kids’ CC Program three years ago, “Changed his life and made an enormous impact,” Becky says gratefully. Care coordination became easy as clinic days involved his whole team working together to ensure everything was understandable and organized. They became a trusted voice that built rapport over the years as they “got to know your child and history, not only on the computer screen but truly grew up with him.”

Attending clinics was better for Rhys and his caregivers since they only needed to travel 15-20 minutes from home. Rhys also developed white-coat syndrome because of the trauma brought by frequent and painful hospital visits. Grandview Kids, on the other hand, a facility where Rhys received therapy and attended school, was a familiar place full of positive memories. CC clinic days brought peace of mind and happier trips, which led to less stress, enabling Becky to be a more present parent and caregiver.

Becky acknowledges the real threat of being on the precipice of caregiver burnout. “You must become that advocate early on, but you don’t know enough. You need to do your research, but when you go on the Internet, you find mixed information and navigating through everything is difficult,” Becky shares. She attributes a large part of Rhys’ success to the connection to the CC team. Their assistance in working through complicated choices to make informed decisions made their lives easier. Continuity of care was a top priority throughout the journey, even leading to and after graduation. Becky felt she could reach out to the team, knowing peer-to-peer support was present, and that an answer to a question or referral would be made if necessary. The team was “available, resourceful, friendly and truthful” over the years, making the transition from paediatric healthcare to adult healthcare less daunting.

Want to learn more about the Complex Care Program?

Click here to view the dedicated program page.

During the month of April, we observe Autism Awareness and Acceptance Month to recognize and support individuals living with Autism Spectrum Disorder (ASD). ASD is a neurodevelopmental condition that affects brain development. Children and youth with autism may face challenges with social interactions, have difficulty making eye contact, exhibit repetitive behaviours and experience speech difficulties. Some may be non-verbal, while others may speak occasionally or lose the ability to speak after initially using words.

In recognition of Autism Awareness and Acceptance Month, family members of clients shared their experiences of being caregivers to children with autism.

Kaleb’s Story, written by Kaleb’s mom, Erika

My child’s autism diagnosis hasn’t just changed me, as a single mother, but everyone Kaleb and I are closest to. It has made us much more understanding and patient. Personally, I feel like I am so much stronger as a mother. Kaleb doesn’t just have an autism diagnosis but multiple diagnoses including serious mental health issues, and this has made me become such a strong advocate for him and any child with similar disabilities.

I celebrate autism every day, week, month and year! Autism Awareness and Acceptance Month means the world to me and my family. I am trying very hard every day to make sure Kaleb and every child with autism receive the proper help in school and the community. Sadly, autism is still fairly unknown, so the proper support systems are hard to come by locally. I try as much as possible to join any online groups and fundraisers whenever possible for autism awareness and acceptance.

Logan Story, written by Logan’s mom, Kayla

Logan’s Autism diagnosis flipped our entire world upside down, and in many ways, despite the struggles, for the better. I was on my way to becoming a 9-1-1 telecommunicator and was about to graduate college when it became increasingly obvious he was “peaking.” Our family doctor had pushed for assessments through Grandview Kids from an extraordinarily young age, and at the time, I was ignorant. With his delayed/missed milestones and speech coupled with increasingly intense tics at the age of two, we finally agreed to be assessed and got his diagnosis.

As a family, we have altered our lifestyle, including future and occupational goals, to focus on Logan’s functioning, education, seizures and other medical issues that have come as a result of comorbidity to his Autism. Regardless of the sacrifices and cons, this diagnosis has brought us so much knowledge and resources and provided a community for us to thrive and grow. Logan and I have met the kindest souls through Grandview Kids, including other children on the spectrum and parents navigating this disorder that we can relate to.

We will celebrate Autism Month by sharing posts and stories to spread awareness, wearing our coolest Autism merch and most importantly celebrating Logan’s 6th birthday on April 5th – which always feels like such a fitting month since learning of his Autism Spectrum Disorder (ASD) diagnosis! Double celebration! This month to us is not only about awareness, but supporting the de-stigmatization of Autism as well. I hope that in spreading information and combatting misinformation we can further educate those that do not understand the spectrum and help enlighten parents of neurotypical children on how to teach their youths to be a supportive friend and ally to those with ASD and similar conditions. This month is not only celebratory but promotes education and, in turn, acceptance just by being noted and seen. This month creates a sense of togetherness and opacity in a diagnosis that can often feel lonely and invisible. “To be loved is to be seen” ❤️!!!

A drawing by Logan of the former
Grandview Kids headquarters.

As an “Autism Mom,” I try my best to spread awareness of the immense talents, abilities and positive traits of my own child and many other individuals on the spectrum. I believe there needs to be more focus on the pros and gifts that come with Autism, without dismissing that there are negative aspects too. I utilize word of mouth and social media to distribute helpful information. I also proudly wear my pins, jewelry and clothing not only to show my pride and support for my son and his community, but knowing someone may ask me about what I’m wearing and open the floor to meaningful discussion.

Molly’s Journey, written by Molly’s mom, Erin

In the first couple of years after our daughter’s diagnosis, we felt overwhelmed and lost, unsure of what the future would hold. But as time went on, we realized that the diagnosis wasn’t the big, bad monster —it was simply a part of who she is. That shift in perspective allowed us to focus on the small wins and everyday joys, appreciating life in a way we had not before. It also pushed me out of my comfort zone. As someone who is naturally shy, I had to learn to speak up, advocate and take things head-on. This journey has changed me in ways I never expected, making me stronger, more present and more grateful for each moment.

For Molly, celebrating Autism and Grandview Kids goes hand in hand. She loves hearing the story of her diagnosis and how she started at Grandview Kids, often looking through old pictures and her communication book to see how far she’s come. It’s a special way for us to reflect on her hard work and progress. We also try to change our outside lights to blue for April—though some years, life gets busy! Last year, Molly took the celebration into her own hands by asking her teacher to share her story with her class on World Autism Day. She even created her own slide deck, explaining her challenges and how Grandview Kids helped her learn to speak. Seeing her take pride in her journey is the best way we celebrate. Watching her stand up and speak for herself was such a proud, full-circle moment.

This month is a great reminder to keep awareness and acceptance front and centre. It’s important to keep the conversation going and support efforts that make a real difference. The more we talk about it and help others understand, the more accepting and inclusive the world becomes—not just this month, but all year round.

Like Molly, we focus on supporting Grandview Kids and sharing our story to help spread awareness of how they’ve made a difference in our family’s life. Over the years, we’ve participated in various events, with the most significant being our role as an Ambassador Family for the recently completed Believe Campaign. But awareness and acceptance also happen in the small, everyday moments—by being open and honest with family, friends, colleagues, neighbours and even acquaintances. We love to talk about Molly because she is such a unique, kind and funny person who brings us so much joy. We believe people learn best when they have a personal connection and feel comfortable asking questions, so we embrace those conversations whenever they arise.

Teagan & Logan’s Story, written by Teagan and Logan’s parents, Gregory & Kara

My children’s autism diagnosis has made us realize that as a family, no matter how many challenges life throws at us that we can get through everything if we work together. We are celebrating Autism Awareness and Acceptance Month by making sure that we are actively involved in the autism community through participation in social groups and attending events that cater to children with autism. This month is a chance to showcase all the amazing, unique and inspiring things that our children can do and have accomplished. We encourage our children to be part of groups, events and show people that despite their diagnosis, our children can enjoy and be active members of the community. We also share resources with other families to let them know what is available for their kids and encourage them to join.

Faith’s Journey, written by Faith’s mom, Sophia

Joining the autism club was not something I signed up for, but wow—what a journey it’s been! My daughter’s diagnosis has completely reshaped who I am, and honestly, I like this newer, better version of me. I have become more patient, kind and much less judgmental, and I am proud of the grace and joy I bring to tough situations now. The challenges? They are very real. But they have taught me to embrace life’s messiness and celebrate every little victory. It’s been a wild ride, and I would not trade the lessons or the love for anything. There is nothing I cannot get through now.

This month, I’m keeping the spirit of awareness and acceptance alive in so many ways. First by celebrating how far we have come as a family with a child on the spectrum. I’m reminding my team at work that it’s Autism Awareness and Acceptance Month and encouraging them to support activities or even join me in donating to amazing organizations like Grandview Kids or Autism Ontario. I’ll be guest-hosting an Autism Awareness Podcast with another family who has a son on the spectrum, which I’m really excited about. I’m also participating in a fundraising walk at Whitby Heydenshore Park. Beyond that, I’m making it a priority to keep the conversations going—sharing resources, stories and simple ways everyone can help create a more inclusive world. Every bit of effort makes a difference!

Autism Month is all about celebrating the amazing ways individuals with an autism diagnosis, like my daughter Faith, see and experience the world. It’s a chance to listen, learn and make sure everyone, including her, feels valued, included and safe to be her unique self, no matter how they think or communicate. In my community—like at my daughter’s school, with friends and at church—I use my experience as a mom of a thriving autistic daughter to share helpful tools and resources. This includes sharing programs like the Access 2 Card for participating venues like CNE and Wonderland, Autism Ontario sensory-friendly events, the Sunflower Program for airports and information on OAP funding. I love helping families discover opportunities that make a real difference for our kids and their caregivers.

Éamon’s Story, written by Éamon’s mom, Susan

Our son’s Autism has made us realize that you can never truly understand all that someone else is going through. He has helped us see the world in different and positive ways. The community that our son has built around himself just by virtue of his diagnosis has astounded us in their capacity for caring, understanding and support. Despite the stereotypes associated with being “different,” our son shows us every day not to underestimate his abilities.

As the youngest of five, I always admired my older siblings. However, it is my brother Mohsin who leaves the deepest impact on my life. When he was diagnosed with autism and pervasive developmental disorder as a child, I was too young to understand what that truly meant. All I knew was that Mohsin was different—not in a way that made him less, but in a way that made him uniquely himself. His love for music, especially singing, was unlike anything I had ever seen. And while his journey looked different from mine, one thing never changed: how much we loved him.

Being Mohsin’s sibling has shaped me in ways I never expected. It’s taught me patience, empathy and the importance of seeing people for who they truly are. Siblings often play a unique role, despite the fact we’re not always seen as caregivers, our influence can be profound. Through Mohsin, I’ve learned how to advocate, listen and celebrate the strengths in others, even when the world doesn’t always recognize them. His journey has inspired me to work in the field of mental health and advocacy, striving to create a world where everyone, regardless of ability, has the opportunity to thrive and be valued for exactly who they are.

April is Autism Awareness and Acceptance Month, a time to recognize and support the autism community in meaningful ways. Awareness isn’t just about understanding autism; it’s about taking action. It means ensuring that spaces are accessible and equitable. Accessibility focuses on making sure people can physically enter a space or use a service, but equity goes further. It’s about providing the right support, resources, and opportunities so that everyone, regardless of ability, can fully participate and thrive.

This month, I’m focusing on sharing stories that highlight the strengths, challenges and experiences of individuals with autism, learning more about what it is and supporting local advocacy organizations in Durham Region. Beyond that, I want to encourage conversations that challenge stereotypes, promote meaningful inclusion, and recognize the value that neurodivergent individuals bring to our communities.

My brother Mohsin has taught me so much about resilience, joy and the power of unconditional love. His journey hasn’t always been easy, but it has been full of growth, laughter and connection. Autism Awareness & Acceptance Month is a reminder that embracing diversity and practicing kindness should not be limited to one month, but something we work toward every day. By listening, learning and advocating for real change, we can build a world where everyone has the opportunity to thrive.

Anna is a Grandview Kids graduate diagnosed with autism spectrum disorder (ASD), a heart defect and was born without her right index finger due to banding syndrome in utero. Through careful blending of her life experiences, skills, education and beliefs, she has become a beacon of inspiration for all those who get to know her. Anna’s passion for the performing arts was instilled from a young age through formal dance, vocal and piano lessons. This led her to pursue secondary education in acting and media studies. She has built an impressive social media presence through content creation for cosplay, drama and advocating for individuals with disabilities. In 2023, she created a panel discussing the challenges of being autistic and a cosplayer and aims to present this informative seminar in as many conventions as possible.

Grandview Kids has been part of her whole family’s life since Anna was diagnosed with ASD at the age of seven. “Without my mom and Grandview Kids’ early intervention, I wouldn’t be where I am today,” Anna gratefully shares. She received speech-language pathology (SLP), occupational therapy (OT) and medical services to help support her limb difference. Her missing finger significantly impacts fine motor skills like grasp control which leads to difficulty performing daily activities such as using utensils, pencils and getting dressed. Grandview Kids connected Anna’s family with vendors to help provide her with specialized equipment, like a special computer with a circular mouse ball, to ease the burden of functionality. Anna is currently waiting to receive a prosthetic finger to make her everyday tasks easier.

Beyond the physical challenges, Anna professes that the hardest part of her disability is the social aspect. She faces discrimination due to people’s ignorance and/or curiosity. People stare and can be afraid and mean-spirited towards her, not wanting to interact because of her missing finger. Anna has even had difficulty with teachers treating her poorly by not considering her missing finger when grading her work in subjects like art and writing. Although Anna’s mom, April, lightheartedly admits that “she’s the best 9-fingered artist she’s ever met!” Bullying by other students and peers persists due to the lack of conversation about limb loss. She hopes a prosthetic finger will become a new avenue for greater engagement, shifting the dialogue from “ew” to “cool.” These social barriers have not left Anna feeling defeated. Rather, these interactions solidify her convictions to be a louder, stronger voice for others.

Anna’s tenacity is being recognized within her community. She was the 2025 Grandview Graduate “Spirit of Grandview Kids” award winner. Her nominator aptly describes Anna’s endeavours as “unwavering commitment,” as she “transform(s) her challenges into a catalyst for advocacy, striving to create a world where everyone has equal opportunities.”

Anna attests that raising disability awareness is important to her because she recognizes that anyone can become disabled at any point in life. “Anyone can lose their abilities and capabilities due to aging. Sometimes, home or workplace accidents occur and cause a disability or limb loss. People need to know that it’s not scary. So you shouldn’t be scared of people with limb differences,” she says. Anna encourages others to be empathetic. She notes that people should feel open to asking questions but quickly move on rather than make assumptions and focus solely on one aspect of a person’s identity.

Written by Ambassador Advisor and Grandview Kids parent, Abby V.

During her pregnancy, Tabitha received the hardest news a parent could hear after completing Non-Invasive Prenatal Testing (NIPT). Her unborn child was diagnosed with Trisomy 18, or Edwards Syndrome, a severe genetic disorder caused by an extra copy of chromosome 18. She was told the condition was “incompatible with life” and had to decide whether to terminate the pregnancy or carry it to term, with the likelihood of stillbirth. Even if the child survived delivery, critical developmental and growth issues would make survival past the first year highly unlikely.

As a parent, Tabitha felt “scared to death” upon receiving the diagnosis. She mourned her entire pregnancy, as there was little assurance her child would survive after birth. Tabitha made the difficult decision to continue the pregnancy, allowing her child to “call the shots.” Jamilah was born at 34 weeks gestation and spent several months in hospital for stabilization and growth. Many children with Trisomy 18 have heart conditions, physical deformities and feeding issues. Jamilah has two holes in her heart that closed on their own, thick heart muscles that have remained the same size since birth and has miraculously not required surgery. She also has an index finger that leans over her middle finger, uses a G-Tube, has hearing loss and is non-verbal. At two-and-a-half years old, Jamilah’s growth and development are delayed compared to her peers.

Trisomy 18 affects every aspect of Jamilah’s life. “Everything is different,” says Tabitha. She must always prepare equipment, formula and medication for Jamilah whenever they leave home. Tabitha’s ability to work is also impacted, as Jamilah requires constant supervision. Due to her condition, Jamilah cannot be left to cry for even a few minutes, as she may vomit, aspirate or experience respiratory desaturation (low blood oxygen levels). “It gets frustrating at times, but her smile is worth it,” Tabitha says proudly. “If I had listened to the expert opinions, Jamilah wouldn’t be here. There’s a lot of work involved, but she brings so much joy, smiles and fun.” When introducing Jamilah to her obstetrician, Tabitha was told, “I see your purpose, and I get it.”

Grandview Kids has been a big part of Jamilah’s life. She is seen regularly through the Durham Region Complex Care Program and receives services for Physiotherapy, Occupational Therapy and Speech-Language Pathology. They are working on things that she can thrive at, and Tabitha knows that Jamilah will let her mom know when she is interested and ready to reach new goals, such as oral feeding. Tabitha had to learn Jamilah’s needs to determine what and when she would benefit most from therapy and appointments.

Tabitha uses her experiences to advocate for Jamilah and to help other parents in similar situations. She advises parents to “go with your gut feelings. You are in control. This has to be your decision because at the end of the day you are living with the decisions you make.” Although she recognizes that everyone’s diagnosis is different and not everyone’s story is like hers, regret is hard to overcome when decisions are made ultimately because of external influence. For now, Tabitha maintains a positive attitude through it all and knows that they will make it work. She is living day-by-day and taking cues from Jamilah.