Awareness Days

Brain Injury Awareness Month, recognized each March, provides an important opportunity to bring attention to the prevention of traumatic brain injury (TBI) and to promote strategies to improve the quality of life for persons living with TBI and their families.

Claudia N., a Grandview parent and member of our Family Advisory Council (FAC), tells her son Reid’s story:

“Brain injury is invisible and often misunderstood. The scars may not be obvious, but they are there. They show up in the way you move, talk, and process information. My son acquired a traumatic brain injury (TBI) after a rare complication of brain inflammation during influenza.

Claudia taking a selfie of herself with her two children. — Claudia N., with her children.

Claudia's son and daughter in a portrait like photo. — Claudia N., with her children.

He was a rep-athlete in hockey, basketball, soccer and baseball. The more contact he had in sports, the better. Now he can no longer have contact. This was his identity. He had to re-learn everything, from riding a bike, walking, and running to tying his shoelaces.

Having to answer the question, “why doesn’t my brain or body work like it used to?” daily is heartbreaking.

Grandview Kids showed me there is hope after a TBI, but it begins when it is taken seriously by others. Instead of hockey, they introduced him to golf. Instead of tackle football, they are teaching how to swim. He was resistant at first but is now secretly loving it. They showed him that there are different directions that can just be as fulfilling. When he wanted to give up, they simply wouldn’t let him.

Claudia's son, Reid, sitting in the hospital bed for rehabilitation. — Reid in the hospital for rehabilitation.

Claudia's son, Reid, playing wheelchair basketball with his friends. — Reid in the hospital for rehabilitation.

As his mom, seeing him feeling so lost every day is excruciating, and I wish I could trade places with him. Disabilities come in all shapes and sizes and visibilities. Yes, this injury is invisible, but the impact and effects are as lifelong as visible ones.

The good news is that with the right support and accommodations, there is light at the end of the tunnel. Next time you meet someone with a TBI, just know how much more there is behind those sweet eyes looking back at you.”

World Birth Defects Day is observed on March 3 each year and unites people and organizations working in the field of birth defects, also known as congenital anomalies, congenital disorders, or congenital conditions.

Globally, an estimated eight million newborns are born with a birth defect every year, of which around 300,000 die due to associated complications. Although it started as an annual event, this day has now become a movement for significant improvement in birth defects prevention and care.

Grandview Kids’ client, Shayaan, was born with a birth defect called Amelia. His mother and a member of the Family Engagement Team at Grandview Kids, Fadia, tells their story:

“The day my second child was born was not a day of joy or celebration for us, but a day of mourning. Our son, Shayaan, was born with a congenital anomaly called Amelia, which means he was born without both arms above the elbows.

Shayaan as a child in a painting/colouring class. — Shayaan as a child.

Shayaan learning to eat. — Shayaan as a child.

As parents of a healthy first child, we never anticipated having a child with a birth defect. Shayaan’s disability brought a multitude of questions and fears, such as how he would learn to walk, use the toilet, eat, and even get married. We went through all the stages of grief, including denial, anger, guilt, depression and finally, acceptance. It took me five months to come to terms with reality and nearly a year for my husband.

Taking Shayaan out in public was another challenge for us as we struggled to cope with the stares, whispers and hurtful comments. Despite our efforts to conceal his disability, we found that we could not. However, it was our seven-year-old son who taught us to focus on the positives. He pointed out that Shayaan still had eyes, ears and tiny feet, and we realized that we had been fixated on what our baby lacked instead of what he possessed.

Shayaan’s disabilities presented new challenges as he grew older, but we found comfort in the network of supportive parents we met through various support groups. We had genetic testing done twice, which revealed that Shayaan’s birth defect was not genetic. Not all birth defects are caused by gene mutations; some are caused by unknown reasons.

Now, at 16-years-old, Shayaan has undergone 16 surgeries and continues to experience pain, but he remains a remarkable young man with aspirations for the future. We quickly learned that he always found ways to accomplish things, and we allowed him to navigate challenges on his own. Shayaan has become an advocate and has been partnering in research to bring awareness by sharing his personal stories and his lived experiences.”

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.

Grandview Kids client, Xander, was born with a rare disease called Moyamoya. His mother, Laura, tells their story:

Baby Xander after surgery. — Baby Xander

“At 10-months-old, my son had a seizure, which we then found out was a stroke. The stroke damaged the right side of the brain. We were searching for answers as this was completely out of the blue. Once the doctors did an MRI and an angiogram, they found out that he had a rare condition called Moyamoya. The meaning of “a puff of smoke” in Japanese. This is where the blood vessels in the brain narrow over time, and it looks like they have literally disappeared in the MRI.

His right side of the brain and left side were narrow, so it was decided that he get bilateral brain surgery to help with the blood flow and to help prevent another stroke from occurring. But after only being home for four days, he had another stroke, this time damaging his motor control on the left side.

We ended up at Holland Bloorview for rehabilitation, where they worked with him to gain strength back in his left side, mainly his left hand. Since having the surgery, he is doing much better, but the doctors still must watch to make sure that other parts of the brain are not narrowing as this is a progressive disease and there is no cure.

As parents, it’s extremely difficult to deal with this diagnosis, but he has shown so much improvement. That makes it a lot easier to navigate his diagnosis and relax a little bit. We hope that one day there will be a cure.”

Rare, catastrophic form of intractable epilepsy, frequent seizures, poor seizure control and developmental delays. Children with Dravet Syndrome do not outgrow this condition, affecting every aspect of their daily life.

My 11-year-old has Dravet Syndrome, and this is the definition of his condition. Colton had his first seizure in April 2012 at 8-months-old, lasting 20 minutes. His second seizure was 15 days later, which was the longest stretch he has been seizure free since. In 2012, Colton was in an ambulance 13 times and underwent an MRI and multiple EEGs. At the end of 2012, Colton was seizing daily and maxed out on three medications. He was 18-months-old, unable to walk and spoke two words.

Jacki hugging Colton. — Jacki and Colton.

I was scared for my baby. When he was awake, I couldn’t take my eyes off him. I was on constant alert, never knowing when he would seize next nor how long it would last. Doctors weren’t helping, medications weren’t helping and my family’s dreams and hopes were fading.

For years, I lived my life in fear, on edge and doing everything in my power to create this “bubble” where I could keep my son safe from seizures. This changed in February 2016 when our family went on Colton’s Wish Trip to Give Kids the World. Although I was petrified to get on a plane and leave our city, let alone the country, I knew I had to be strong for Colton. I looked fear in the face, I took Colton on his first rollercoaster: the Seven Dwarfs Minetrain. My fear of him having a seizure on the ride was almost crippling, but what happened next completely changed me. Colton had the time of his life – he screamed in pure delight. He smiled, and my heart was so full. It was then, I saw how my fear was holding him back from joy.

Jacki beside Colton as he is sitting on animal ride.

Parenting a child with epilepsy is hard. Through the years, there have been many challenging days but even more joyful ones. We found the right doctors, the right therapists and the right support staff, and that has made the journey easier. I educate and teach people on how to care for Colton so he can live the life he wants, one that includes going to school, swimming lessons and playing mini sticks and on the PlayStation with his brothers and sister. Colton now walks and has a 100-word vocabulary; he loves to travel and do puzzles, and he has been on many theme park rides. With the help of the Ketogenic Diet, he is on less medication today than when he was an infant.

Today, Colton had a seizure. I will never get used to it, but I no longer allow these seizures to keep Colton from living his life. I no longer let these seizures cause me to fear. After recovering from his seizure, Colton asked to go to school, so I took him. I am proud of him for being so strong. There is no longer this safety bubble because I have learned over and over that although it is okay to be scared, it’s not okay to stop living.

As an ever-strong champion for kids like her son, Jacki joined the Grandview Kids Family Engagement Team as a Peer Navigator in 2021, using her lived experience to help other families.

Meet our volunteers!

Grandview Kids is fortunate to have a team of more than 150 incredibly talented and caring volunteers across all of our sites. To continue our National Volunteer Week celebration, we interviewed 5 of our volunteers to get insight into their work with Grandview. In this series of interviews, you will meet Norma-Jean, Taaha, Kirsty, Natalie and Elliot, who will express what volunteering means to them.

Meet Norma-Jean!

Photo of Norma-Jean hugging a pony in a purple tutu.

What is it about volunteering at Grandview Kids that appeals to you personally?

I’ve been fortunate with my family and see that GV provides many much-needed services in the community. I’m grateful for the opportunity to be part of such a worthy cause.

How has volunteer work had an impact on your life?

[It] keeps me busy and fulfills a personal duty in me to give back.

What has your favourite event or volunteer assignment been with Grandview Kids and why?

I’m on the committee for the GV Foundation’s Annual Golf Tournament. I interact with a variety of GV Staff / Ambassador Families other volunteers, donors/sponsors and tournament participants. It’s such a huge event and seeing the results of everyone’s hard work every year really is very satisfying to be a part of it all.

Meet Taaha!

Photograph of Taaha Ijaz in front of a snowy background.

What is it about volunteering at Grandview Kids that appeals to you personally?

To me, the most appealing aspect of Grandview Kids is how dedicated everyone is in providing compassionate family-centred care. Volunteering at Grandview Kids allows me to be a part of providing such care to an exceptional group of clients in our community. In addition, volunteering at Grandview Kids has allowed me to work with a fantastic group of clinicians who are always willing to answer questions I may have regarding their specialty.

How has volunteer work had an impact on your life?

Volunteering at Grandview Kids has made a huge impact on my life. I have been able to learn so many different skills while volunteering. My communication skills with children and their parents have improved significantly – you can read all you want about communication skills, but until you apply them you’ll never develop those skills. I have learned so much about prioritizing especially when there is a rush of clients and their families coming in through the door. Lastly, volunteering at Grandview Kids has also helped me understand the importance of establishing and advocating for more pediatric care centres. Facilities such as Grandview Kids are necessary if we want to help children reach their potential.

What has your favourite event or volunteer assignment been with Grandview Kids and why?

I truly enjoyed volunteering at the Covid-19 vaccine clinic organized by Grandview Kids. Helping children overcome their fear of needles was extremely rewarding.

What do you like to do when you are not volunteering?

I recently learned how to swim, so anytime I’m not volunteering or busy with school you can find me at the pool.

Meet Kirsty!

What is it about volunteering at Grandview Kids that appeals to you personally?

I like to help the kids and be able to get out of the house to do something worthwhile.

How has volunteer work had an impact on your life?

It makes me happy to see that I can help children and it shows me how much the children can improve and be part of the community.

What has your favourite event or volunteer assignment been with Grandview Kids and why?

(Prior to COVID) I loved to do the Free to Read program and I was able to walk around the atrium and interact with the kids as well as giving parents books to read to their kids.

Also, I loved doing the McHappy Day. I liked to see the faces of kids when I gave them balloons and it was great to see people give money to support Grandview.

What do you like to do when you are not volunteering?

When I am not volunteering I like to go to the movies, hang out with my friend Terri and watch wrestling. I enjoy going to the Abilities Centre. I also loved working at The Bistro 67 in Whitby before COVID. I will hopefully get back to work.

Meet Natalie!

What is it about volunteering at Grandview Kids that appeals to you personally?

The most appealing aspect about volunteering at Grandview kids is the wide sense of availability that is presented to volunteers. While volunteers are meant to provide aid in certain positions, one rarely remains in the same setting. We are exposed to various programs within the centre and are always learning more about all of the services that Grandview offers to their clients and families as well as more about the services themselves, ranging from rehabilitation programs to family services. It is not only a beneficial setting for both the individual and the centre, but in turn, the volunteer learns more about the community and the various aspects that go into running such a smooth and lively setting.

How has volunteer work had an impact on your life?

Volunteering has had a major impact on my life in many ways. Although I can positively say that volunteering has allowed me to grow in ways that I believe no other setting would have, I also attribute my weekly contribution as a way of allowing myself to become more certain of the path I would like to take on as my future profession. I started volunteering for Grandview when I was in my second year of university and like many, was somewhat uncertain of what I wanted for my future. It was through volunteering that I was able to learn about various rehabilitation therapists and therapy assistants and the impact such services have on children and youth.

What has your favourite event or volunteer assignment been with Grandview Kids and why?

While it is hard to distinguish a specific volunteer assignment, it would seem that my favourite volunteer assignment at Grandview has been the ability to volunteer within the Speech-Language Pathologist (SLP) and Speech-Language Therapy Assistant (SLTA) therapy groups. Alongside being able to learn more about the various aspects that are involved in each session, it was very interesting to learn about the different ways in which clinicians incorporate to continue to target their clients’ needs while also being able to keep them engaged without trying to make it seem like therapy.

It was enjoyable to be able to see and hear of the progress that some of the clients were making throughout their time at Grandview and to learn about the various skills and actions that are provided for Grandview clients and their families from before they are provided direct support to well after. It was a truly exceptional experience that has cultivated my favourite volunteer assignment so far.

What drives you to keep coming back to Grandview?

What continuously keeps me coming back to Grandview is the sense of community and belonging that is harvested amongst both clinicians and staff members as well as between clinicians and clients/families. Whether it is during a therapy session or workshop, clinicians and several other members of the Grandview team always strive to provide the most exceptional quality of care and service to their clients and to each other, something that I have rarely seen in the various places I have volunteered. Everyone is made to be treated equally and when one is in need of help, whether it is to discuss the best pursuit of action for a specific issue or to just clarify a need from a family, everyone is available to help in any way they can. It truly allows you to feel like you are connected to a greater family, rather than being a fellow volunteer.

What do you like to do when you are not volunteering?

Apart from volunteering, I am an avid bookworm where I try to finish at least 2-3 books a month and I am an experimental baker, always looking for new recipes to try and master.

Meet Elliot!

A photo of Elliot Smith working at a McDonald's Drive Thru on McHappy Day.

What is it about volunteering at Grandview Kids that appeals to you personally?

What appeals to me about volunteering with Grandview Kids is personally, it allows me to give back to the place that helped me when I was younger. The therapists at Grandview helped me learn how to talk and even how to print my own name. I feel included and like part of a team at Grandview. I am now a college graduate and Grandview helped me get there.

How has volunteer work had an impact on your life?

Volunteer work has had an impact on me on a positive note because volunteering has made me become a true leader and a good citizen. I feel good when I can give my opinion and thoughts as part of the Youth Advisory Committee in order to help Grandview become a better place for kids. Volunteering has made me work hard so I can be a positive role model for any Grandview kid out there who thinks they won’t get there. I am now working as a Physical Fitness and Literacy Associate at the Abilities Centre and volunteering at Grandview and other places (Kerry’s Place, Vikings Rugby League and Pickering All Abilities Soccer) has helped me create a good resume.

What has your favourite event or volunteer assignment been with Grandview Kids and why?

My favourite event/volunteer assignment with Grandview Kids has always been McHappy Day. It is my favourite event because I got to work in the Drive Through and give orders to customers. I had a lot of friends and teachers stop by to get their orders from me. We raised a lot of money! I liked helping out with these fundraisers because they were all about showing teamwork and helping others in the community to make Grandview Children’s Centre a more accessible environment.

Why do you think it is important to volunteer (for Grandview Kids and elsewhere)?

It is important to help volunteer at Grandview and other places because it just feels good to give back and help others. To see smiles on people’s faces when you make them happy makes it all worth it. I think it helps to show that we are just like everyone else and we have a lot to offer too.

What do you like to do when you are not volunteering?

I like to read books and play sports like baseball, soccer, rugby, and archery. I also like to play in a band with my bandmates at Online Math and Guitar. Finally, I also like to be involved with social groups at the Abilities Centre.

This year’s theme for National Volunteer Week is Volunteering is Empathy in Action. Click here to learn more about National Volunteer Week.

Nutrition Month 2022

This March, dietitians across Canada are coming together to share how they can support you and make your future a healthier one. We interviewed Grandview Kids’ Registered Dietitians, Heather-Ann and Shelley, about their roles at Grandview and what being a dietitian means to them!

Meet Heather-Ann!

What is your role at Grandview Kids?

I am a Registered Dietitian working with the Complex Care team and Nutrition Clinic.

What does a typical session with your clients look like?

A typical session with clients would include a discussion with the parents and/or child to determine how I can best support them in achieving their nutrition goals and needs. This discussion may include but is not limited to a review of past medical history, current dietary intake, medications/supplements, bloodwork, feeding environment, social history and measuring anthropometric data. Once I have completed my assessment, I would then provide evidence-based nutrition recommendations in a collaborative manner with the patient and/or family to enhance nutrition status and health outcomes.

What inspired you to become a dietitian?

My first interest in nutrition started as a young athlete looking for ways to optimize sport performance. This led to studying Human Nutrition at St. Francis Xavier University, where I became intrigued by the opportunity for Dietitians to improve the health and well-being of others across the lifespan. I was inspired to become a Dietitian so that I could help others achieve healthier and happier lifestyles through the power of nutrition!

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

I would recommend getting children and youth involved in the preparation of meals! Involving children in making family meals and snacks provides the opportunity for teaching valuable life skills, learning about their family’s culture and cooking traditions, as well as exposing the child to new foods.

Meet Shelley!

What is your role at Grandview Kids?

I work at Grandview Kids as a registered dietitian in the Nutrition Clinic. My role is to identify nutrition risks and assess the nutrition requirements of children and youth. My goal is to work with families and their children to ensure optimal feeding and nutrition for their child’s growth and development.

What does a typical session with your clients look like?

A typical session involves review and assessment from the referring individual, further identifying nutrition issues to help families with their child’s feeding or health concerns. My role of late has changed to include a telepractice consult model. This practice has had many benefits for the families I serve. I provide a consultative service to parents/caregivers. Initial nutrition assessment times can be lengthy and telepractice has helped in this regard as the child will be in the comfort of their home and not sitting for an extended duration during the appointment. The Nutrition Clinic Clerk notifies families in advance of their appointment to prepare a 3-day food record of typical nutrition days. This information is reviewed during the assessment and recommendations are then provided to optimize meal planning, feeding, nutrition status and growth.

What inspired you to become a dietitian?

My love for working with the pediatric population was always an inspiration of mine and so tagging this with nutrition was a great fit. Who knew I would go on to be a dietitian when I was that child, as I only ate honey sandwiches and my vegetable of choice was corn! From as early as I can remember, my parents continued to provide variety and opportunity in my meals, ensuring a balanced structure as well as an enjoyable meal experience. In time, my food variety expanded and my interest in nutrition and dietetics flourished in my later years.

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

My managing mealtime tip: make mealtime enjoyable and a priority. Be a role model, eat together and get kids involved in the kitchen early on with a focus on food variety from Canada’s Food Guide.

Thank you for sharing a bit about your journey with us all to commemorate Nutrition Month 2022, Heather-Ann!

Visit the Nutrition Month website to learn more about how you can participate!

Awareness Days

Meet our volunteers!

Meet Norma-Jean!

Meet Taaha!

Meet Kirsty!

Meet Natalie!

Meet Elliot!

Nutrition Month 2022

Meet Heather-Ann!

What is your role at Grandview Kids?

What does a typical session with your clients look like?

What inspired you to become a dietitian?

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

Meet Shelley!

What is your role at Grandview Kids?

What does a typical session with your clients look like?

What inspired you to become a dietitian?

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

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