Family Engagement

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.

Written by Grandview Kids Family Engagement Team Member, Jacki Nemisz

Sometimes you are going to have to be the one that makes the holiday inclusive.

I love Halloween; I love sugar, candy, chocolate. I am that mom that starts thinking about costumes in August. In 2013 when Colton was two years old, we made a decision that was so difficult at the time. After two years of seizures, we decided to start Colton on the Ketogenic Diet, meaning he could never consume artificial sugar, and if he did, the result would be seizures. Doing this meant that holidays, in general, would be tough, Halloween and Easter in particular. In 2013 Colton was still very young, highly medicated and unable to walk, so he didn’t notice after trick or treating when I hid his treat bag. I did, though, and so did my 6-year-old. I knew then that next year would have to be different, and it was going to have to be me that would make it different.

Fast forward to Halloween 2014; this was the first year Colton was walking, and I knew this Halloween had to be inclusive to him. I went to the dollar store and picked up pencils, mini cards, toy cars, stickers etc. I went home, and I composed this letter:

Happy Halloween!

Tomorrow our son Colton will be trick or treating dressed as a Paw Patrol. We would appreciate when Colton comes to your house you give him the attached item or toy. He is on a specialized diet to control his seizures and we want him to feel included in Halloween and enjoy trick or treating with his brothers. For those who don’t know Colton we will introduce him.

Thank you for making this Halloween special for him.

Image of the letter Jackie wrote her neighbours. — Image of the letter handed out to Jacki’s neighbours.

Each year since I have done the same, Colton is older now and sometimes travels to more houses than the items I give out, but that is okay. At the end of the night, when he opens his treat bag, there will be items in there for him. I think it is so important to educate people on how to be more inclusive, but as a special needs mom, I realize that sometimes I will have to do it myself. We make our house accessible and have non-edible treats available, so everyone has a Happy Halloween.

Colton enjoying his Halloween treats after Trick-or-Treating!

Here’s how you can make Halloween fun for all!

Contribution by Family Engagement Team member, Clare Alexander-Arias

The Family Engagement Team is helping all Durham Region neighbours consider making Halloween fun, safe and inclusive to children and youth of all abilities.

Here are our top tips:

Some trick-or-treaters might look a little older than you expect. Be kind as they may have a developmental delay.
Some children may be non-verbal. Do not wait for the child to speak before offering a treat.
Some children may not tolerate wearing a costume because of sensory concerns. Be sure to award them a treat just the same as their peers.
If a child seems overwhelmed or anxious, have patience.
Many children have food allergies. Consider offering a non-edible option for these children (i.e., bubbles, pencils, glow sticks, etc.) Display a teal pumpkin to signify that you have allergy friendly options.

For children who have a hearing impairment, show them the treat before putting it in their bag.
For children who have a visually impairment, tell them what sort of treat you are giving them before putting it in their bag.
Keep all of your walkways and steps clear of obstacles.
Meet trick-or-treaters who use a wheelchair or mobility device at the end of your driveway with candy so they don’t have to navigate up to your door.
You can order or print a sign to display on your lawn to show that families in your neighbourhood that if their child has a disability, they are welcome to enjoy Halloween without barriers at your home. Visit this website to order.
Remember to follow all of the COVID-safe rules as instructed by Ontario’s Chief Medical Officer of Health and the Durham Region Health Department. Read more on the Government of Ontario website.

Family Engagement

Here’s how you can make Halloween fun for all!

Here are our top tips:

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