Stories

During the month of March, we celebrate National Cerebral Palsy Awareness Month to recognize and support the many individuals who live with Cerebral Palsy (CP). CP is a permanent physical disability impacting a person’s mobility and muscle strength. Early intervention, therapies, use of Botox and even surgeries can help a person’s ability to deal with pain management and functionality in daily life. CanChild states that approximately 1 out of every 400 individuals in Canada are diagnosed with CP, and it is the most common physical disability in children.

In celebration of Cerebral Palsy Awareness Month, family members of clients shared their experiences of living with a loved one with CP through the creative expressions of poems and quotes.

A poem written by Grandview Kids sibling, Cyria-Amin

– Cyria-Amin H.

My Brain 

My brain, my brain, so much pain. It can feel me when I am mad, sad, happy, exited and joyful. When I am tired my brain will tell me with a yawn. When I am hungry my brain will tell me by my tummy growling. When I am sick my brain will tell me by making me hot. My brain, my brain. We learn through education and talk with communication. 

We all know that brains work similar but in this case my sister’s brain works differently. When she was born her brain and body did not get enough oxygen. Now she has cerebral palsy also known as CP.  

– Cyria-Amin H.

A message from Grandview Kids parent, Abby

“Wesley was born a micro-preemie and spent his first six months of life in-hospital after experiencing a brain bleed that caused extensive brain damage. We were told to expect that he would never be able to talk, feed orally or walk. He was diagnosed with level 3/4 Spastic Diplegia Cerebral Palsy (CP) near his second birthday. He missed many milestones as an infant, but we learned that with hard work and the right support system, he would reach many of his goals on his own time.  

Having a CP diagnosis meant many hours spent in physiotherapy and occupational therapy sessions, both privately and through Children’s Treatment Centres, and then continuing the exercises at home throughout the week. We relocated and started our Grandview Kids journey in 2019 where we met some fantastic therapists who supported our goals. He was able to gain enough strength to qualify for Selective Dorsal Rhizotomy (SDR) surgery at SickKids Hospital in 2021, followed by extensive rehab at both Holland Bloorview Kids Rehabilitation Hospital and Grandview Kids. 

Today, Wesley’s CP level is considered a 2/3, and he can use a variety of walking aids, including a wheelchair, walker, and sometimes even canes. He gets Botox shots every few months at Grandview Kids to alleviate extra muscle tightness and continues to face challenges with determination and grit. He is in a portable classroom this year and has become great at advocating for his needs to be as independent as possible. We know that there will always be barriers to accessibility, but Wes continues to learn that he must use his voice to pave the path for himself and others.” – Abby 

A message from Grandview Kids parent, Kathy

“Our son, Ethan, started with Grandview when he was 10 months old. He was born prematurely and had missed every milestone. At his first birthday, he couldn’t sit unsupported. Ethan was never expected to be able to walk. However, at six years old, after years of physiotherapy and a whole lot of personal grit, he’s not only walking but also running and jumping. 

Even now, Ethan continues to surpass our expectations. This past November, he participated in his first inclusive athletic event, the Durham Regional Police Children’s Games. Not only did he love it, but he also won Male Athlete of the Year. We are looking forward to this spring, when Ethan will try adaptive soccer and baseball. 

Ethan’s journey is a testament to the power of perseverance, dedication, and the unwavering support of those who believe in him. As he takes on new adventures in sports and beyond, we know he will continue to defy expectations and inspire everyone around him. For Ethan, the possibilities are endless.” – Kath 

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

March is national epilepsy awareness month in Canada, and Grandview Kids hopes to encourage people to acknowledge and understand the disorder and support dismantling the misconceptions, discrimination and isolation facing those who live with epilepsy.

At eight months of age, Grandview Kid Kiara was diagnosed with infantile spasms, which later developed into epilepsy. The seizures occurred when she awoke from sleep, manifesting as uncontrollable body “twitching” and irregular eye movement that could last up to five minutes, with more than 200 spasm clusters. The severity of the seizures required strong medication to stop them. Initially, Kiara was prescribed Vigabatrin, but when it proved ineffective, Levetiracetam was introduced, and Vigabatrin was gradually reduced. Her parents, uncertain about her future, feared seizures would become a daily struggle. Remarkably, Kiara remained seizure-free for nearly five years.

However, one day Kiara experienced a “breakthrough seizure” that lasted an hour. It was summer, and the family had just finished dinner and was relaxing at home when Kiara suddenly began to scream in pain and became inconsolable. Her parents, initially thinking it was due to fatigue, put her to bed. But when her father, Mahendra, checked on her, he noticed she had wet the bed and was twitching and unresponsive. An ambulance was called, and paramedics administered rescue medication, but the seizures continued until they reached the hospital.

Just four months later, Kiara had another seizure. This time, although conscious, she was unable to speak, and half of her body was paralyzed, with her right side completely shut down. During the 20-minute wait for an ambulance, Kiara experienced a seizure lasting two and a half hours, with twitching and foaming at the mouth. Despite several doses of rescue medication, her seizures persisted. It was then decided that Kiara would need an additional daily medication, Clobazam, to help control the seizures.

It has been more than two years since Kiara’s last seizure. Since her first major seizure occurred while she slept, Kiara now co-sleeps with her mother, Nerissa, to ensure her safety. Though she is seizure-free, the family remains vigilant. Unfamiliar body movements, headaches, or even extreme weather (heat or cold) require extra caution. Kiara’s spasms and seizures presented differently, making it difficult to identify triggers and further complicating prevention.

Watching a child in pain and feeling helpless is a trauma no parent should endure. The experience of being a “medical parent” without clear guidelines or treatment plans is equally frightening. Nerissa credits her husband for being a voice of reason, offering advice that helps ground her when the demands of medical parenting become overwhelming.

“You can’t stop life. You can’t prevent these things. You have to go with the flow. Live life and enjoy [Kiara] being healthy now. You can’t stop her growth and her life because of [our] worries and overprotectiveness. Just breathe, and everything will be okay. The seizures have always stopped, and we have resources (the right support, doctors, medications). Don’t project your fears and concerns onto your child.”

While the worry never fully disappears, Kiara’s family has learned to regain some control. Every November 15, they celebrate Kiara’s anniversary of being seizure-free, complete with cupcakes and candles. They sing “Happy Seizure-Free to You,” turning the milestone into a positive celebration. Each year, Kiara proudly declares, “I did it again!”

Written by IDEA committee member and Grandview Kids parent, Abby V.

Rare Disease Day is an international event held on February 28 to raise awareness about the impact of rare diseases on people’s lives and to emphasize the need for research. Canadian families with rare illnesses are facing extraordinary challenges. These include misdiagnosis, unnecessary surgeries, social isolation, financial hardship and lack of treatment options.

Read the interview between Abby and Owen’s parents below to learn more about his rare diagnosis of Kleefstra syndrome and his relationship with Grandview Kids.

Q: What does Owen like to do? 

A: He loves to listen to stories, go for drives in the car, watch wrestling with his dad, and dance, bake and snuggle on the couch with his mom. Like a typical little brother, he also loves to torment his sister and looks forward to her visits home from school. 

Q: What is Owen’s diagnosis and how rare is it? 

A: Kleefstra Syndrome, a microdeletion at 9q34.3. At the time of diagnosis in 2010, he was only the 124^th person in the world to have Kleefstra Syndrome. With improvements in testing, we now believe there are close to 1000 people worldwide with this diagnosis. 

Q: What is Kleefstra Syndrome? 

A: Kleefstra Syndrome is a rare genetic condition that affects development and involves many body systems. Those with Kleefstra Syndrome are missing the gene EMHT1 which is a regulator for other genes. Symptoms can include intellectual delay, autism, low tone, seizures and speech delay. 

Q: What signs and symptoms led to Owen’s diagnosis? 

A: Owen was not meeting milestones as a baby which was initially believed to be due to his being born 6 weeks early. However, it soon became obvious that his collection of symptoms may have a genetic basis. His nasal bridge was shortened, he had very low tone and was not gaining weight due to feeding and swallowing issues. 

Q: How was Owen diagnosed? 

A: He underwent local testing, and the results came back as unremarkable. We decided to have him do a test in the U.S. that looks for gene changes in cells called FISH testing (fluorescence in situ hybridisation). At the time, this test was not available in Canada and required extensive paperwork and approvals. Now genetic testing is more routine and easier to obtain. 

Q: How has Grandview Kids helped Owen? 

A: Grandview Kids became a big part of Owen and his family’s life soon after diagnosis. He has accessed vital services for his development and well-being, including medical, physiotherapy, occupational therapy, speech-language pathology, recreational therapy, social work and family engagement. Grandview Kids helped build a community of support which without, his family would have been lost. Owen has met many of his milestones at Grandview Kids, including his first words, steps and riding a bike. 

Q: If you could go back to the day of Owen’s diagnosis, what advice would you give to yourselves? 

A: Hold on! Seriously, just let him lead and follow his direction. Nothing changed on diagnosis day. He is still the exact same kid; we just got more information. 

Ryan’s ARFID Story 

Written by IDEA committee member and Grandview Kids parent, Abby V.

Eating Disorder Awareness Week (EDAW) occurs from February 1 to 7 annually across Canada. This week is dedicated to raising awareness and developing understanding about eating disorders and how it impacts people’s lives. Eating disorders come in various forms, each with its unique set of challenges and symptoms. In Canada, an estimated 2.7 million people are impacted with approximately 1.4 million of these being youth. Common eating disorders are Anorexia Nervosa (AN), Bulimia Nervosa (BN), Binge Eating Disorder (BED) and Avoidance Restrictive Food Intake Disorder (ARFID). 

Ryan is a sweet, curious and intelligent eight-year-old boy who lives with his doting parents, Ali and Dima, and their beloved cat, Goldie. He loves spending time outdoors in nature collecting leaves, catching bugs, fishing at his family’s cottage and playing at the beach during family vacations. His curiosity is seen through the endless questions he will ask his parents about topics of interest, including numerous studies of science such as physics, space and animals (reptiles and ocean creatures).  

When Ryan’s mom, Dima, was pregnant with Ryan, she was referred to Ontario’s free Healthy Baby Healthy Children program that provided her with a nurse to help guide her through pregnancy and provide postpartum support due to her lack of family in Canada. A few months after his birth, he began to exhibit some alarming signs of concern which included how the way he would play (spinning everything), lightly hitting his head on wall and babbling that ceased at six months. The biggest alert was his refusal to eat solid food.  

Soon after, Ryan’s paediatrician referred him to Grandview Kids. “We were lucky to meet our Grandview Kids doctor after a short waitlist of five months. Ryan was only 18 months old. We feel very fortunate to receive an early diagnosis of mild autism spectrum disorder (ASD) six months later which allowed us to provide early intervention,” recalls Dima. His refusal to eat was still a huge challenge and Dima knew it was not just “picky eating” due to his ASD. She connected with other specialists and parents in the community, which led her to discover Avoidance Restrictive Food Intake Disorder (ARFID).  

Ryan was referred to Holland Bloorview Rehabilitation Hospital to participate in the first ever ARFID study for kids in Ontario and Ryan received an official ARFID diagnosis. As there is a lack of information and programs offered for ARFID for kids under the age of 18, this study was promising but unfortunately did not continue for long. Dima and Ali continued to provide Ryan with unwavering support. At Grandview Kids he accessed services in Speech-Language Pathology, Occupational Therapy (OT), Therapeutic Recreation Therapy and went on to private OT and a food explorer therapy program. While the interventions certainly helped Ryan in many areas affected by his ASD, he was still not eating any solid food. They considered applying for costly programs offered in the US, even going as far as communicating with the Ontario Ministry of Health in hopes of securing funding as these vital programs are not offered in Canada. 

Ryan’s turning point was during the Summer of 2024 when his Grandview Kids’ paediatrician suggested the use of an antidepressant medication to curb his anxiety around food. “When he looks at a plate of food, he doesn’t see food. Instead, he sees something scary like spiders. Ryan used to cry when he would see me with a plate of food and would take me to my bedroom thinking he was keeping me safe,” says Dima. At 7.5 years of age, Ryan was finally able to consume solid food for the first time in his life. With the help of his amazing Grandview Kids team consisting of his paediatrician, nurse, and nutritionist who meet monthly to adjust the medication dosage to suit Ryan’s needs, “he is less anxious around food, more willing to play with it and comfortable to try and put it in his mouth.”  

Eating remains a challenge as he will still only eat five food items, often gaining one type only to drop another. Dima shares how “it was stigmatizing for Ryan to drink milk from a bottle at school.” However, she beams with pride and joy because he is now chewing and swallowing food, new skills that he had to learn, and he can go to school with a lunchbox like his peers. His success has really driven his parents to shift their perspective. “Once I stopped comparing him to others, and began comparing him to old versions of himself, I could see the progress. I tell him to be proud of himself. His teacher said he has high self-esteem because of his supportive, loving parents.”  

Feeding Tube Awareness Week, observed from February 2 to 8 this year, aims to increase the understanding of feeding tubes and their critical role in supporting the health and well-being of children with medical complexities. The week promotes best practices, innovations and the lived experiences of families who rely on tube feeding.

Founded in 2011, this initiative has grown into a nationwide movement, with SickKids Hospital launching the first Feeding Tube Awareness Week in Canada in 2020. This global observance, held annually in the first week of February, highlights the life-saving impact of feeding tubes and helps challenge the stigma surrounding them. Families come together each year to share stories and raise awareness of their positive influence on patients’ lives.

Jamilah’s story

Tabitha’s birth plan for her youngest child, Jamilah, was drastically altered when cysts in Jamilah’s brain were discovered at the 20-week scan. This was followed up by testing positive for Trisomy 18, also known as Edwards Syndrome, during the noninvasive prenatal testing (NIPT) tests and confirmation of the genetic disorder at 32 weeks gestation. Edwards Syndrome affects many body parts, causing health issues that include feeding or sucking difficulties, trouble gaining weight and congenital heart issues. Tabitha’s high-risk pregnancy resulted in an induction at 34 weeks of pregnancy to ensure her team of healthcare professionals would be present to assist her during the birth. 

Jamilah spent nearly three months at the hospital’s Neonatal Intensive Care Unit (NICU), where she initially had a Natrogastic (NG) Tube but began projectile vomiting her feeds. Her medical team advised that a Gastrotomy Tube (G-Tube) was her only real option to keep her thriving. Jamilah was transferred to SickKids Hospital for G-Tube insertion and stayed in the hospital for two additional months for growth and stabilization.  

Knowing that you are making the right decision for your child as a parent does not always make it easier. Tabitha had to come to terms with the fact that since there was no other choice, there was no point in being upset. She would learn to make the best of it for her daughter. She recognized that the G-Tube was helping Jamilah thrive, along with other positive changes. Regular feeds made it easier to schedule appointments and her calendar.

As a single mom working from home, a G-Tube alleviated the time spent sitting down and bottle-feeding Jamilah every time she was hungry, as formula can be fed straight through the tube. However, there are challenges attached to having a G-Tube, such as getting outside of the home with all necessary equipment and sometimes requiring stopping on the side of the road to administer a scheduled feed. There is also the learning curve to prevent the tube from being pulled out and what to do if it happens. 

Tabitha’s advice to other parents starting or continuing their G-Tube journey is to “take it all in stride and watch for what your child needs and what will help them thrive.” Becoming a medical parent makes one second guess their own skills and abilities to raise their child effectively, but those parental instincts play a huge role. “Pay attention to your child and not the diagnosis. Nobody knows your child better than you know them. You will know what is working and what is not,” Tabitha reminds fellow parents. It is vital to work collaboratively with your healthcare team but know that you—as mom, dad or caregiver—are the one with your child every day and are their biggest advocator.