Awareness Days

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.

Henley’s story

Henley lives with his parents, Josh and Laura, and their two dogs, Riley and Zoe. At seven months of age, Henley was diagnosed with Kabuki syndrome, a rare genetic disorder that affects multiple parts of the body. In Henley’s case, his diagnosis primarily affects his feeding abilities and hips. The first sign that hinted at something being amiss began when he was not feeding well nor gaining weight. When he was two months old, he received a failure to thrive diagnosis and required life-saving intervention through the insertion of a Nastrogastic (NG) Tube which was five months later replaced with a Gastrostomy Tube (G-Tube).

Josh and Laura’s journey started before Henley’s conception as he was a surrogate baby conceived through an egg donor. Henley was a baby that the family truly desired and waited for patiently. Therefore, despite doing everything they could with prenatal genetic testing through the fertility clinic, his genetic disorder was a shock.

Laura, also a professional Registered Nurse, admits that the decision to insert a G-Tube was harder to accept than the actual Kabuki syndrome diagnosis itself. “Overall, it was a lot to process, but with the G-Tube, as a mom and nurse, it seemed so permanent. We tried to avoid it but when looking at the pros and cons, and the thought of not nourishing your child at all, the G-Tube made the most sense,” says Laura. The acceptance piece took time but after processing everything, it was the best decision for Henley and the whole family as it allowed him to get to where he is now.

Henley’s parents worked closely with his nursing team to educate themselves on how to use the device correctly and to best meet Henley’s needs. Laura explains that “it was a learning curve. We had to know what medications and food/formula could be given through the G-tube, how to vent the tube (opening the tube to allow trapped gas/air to escape and massaging his belly), organize a caddy with syringes, prevent Henley from pulling the tube out and work around a new feeding schedule wherever we were. Henley had a G-Tube backpack which made it easier on the go.”

Henley’s G-Tube journey has recently ended with the successful removal of his G-Tube. After swallowing assessments and being guided by a dietitian, his parents were able to safely introduce oral foods for him. Through a gradual wean of slowly decreasing his G-Tube feeds, he started to show signs of hunger and began eating purees and drinking water. Although they now face different challenges, he is primarily orally fed.

Laura acknowledges that Henley’s success story may not be the same for others and feels very fortunate to have reached this point. Her advice to other parents who may be at a crossroads debating the use of a G-Tube for their child is to “look at what it can do for your child. Let your child lead the way through the journey by following their cues and trusting the medical team in the process. The harder decision is sometimes the right decision, even if at the time it is hard to accept. Educate yourself the best you can, talk to other parents with similar journeys for added support and ask questions – there are no silly questions, you need to be 100% comfortable with what you are doing. Finally, try to see the process as a positive experience knowing that [the G-Tube] is helping your child.”

Henley is now two years old and nine months. He eats orally and his favourite foods are strawberries and cheese and crackers. Following a simple procedure in Fall 2024, Henley had his G-Tube removed and has healed well.

In December and January, we acknowledge Hanukkah, Christmas, Kwanzaa and Orthodox Christmas. Read more about each holiday below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Hanukkah: December 25 to January 2, 2025

Hanukkah, the Festival of Lights, originates from a historical conflict in 175 B.C., when King Antiochus prohibited Judaism in Judea, resulting in the destruction of the Temple of Jerusalem. The subsequent rebellion, led by Judah the Maccabee, culminated in victory around 164 B.C. The unique aspect of Hanukkah lies in the miraculous event involving a single jar of oil found upon the Maccabees’ return to the Temple. Initially sufficient for one day, this oil inexplicably burned for eight days, providing ample time for the victorious Maccabees to secure additional sacred oil. This extraordinary occurrence is commemorated through Hanukkah’s eight nights of celebration.

Today, the festival’s commencement varies in the Gregorian calendar, with the 2024 celebration spanning from December 25, 2024, to January 2, 2025. Traditional practices include lighting a menorah, adding one candle each night, reciting blessings and exchanging gifts. The festival also features festive foods like sufganiyot and latkes, symbolizing the enduring lamp oil. Families partake in spinning a dreidel for chocolate gelt, adding to the rich traditions of Hanukkah.

Christmas: December 25, 2024

Christmas Day is celebrated globally to commemorate the birth of Jesus Christ. It is observed by both Christians and non-Christians as a religious and cultural holiday. Though the exact date of Jesus’s birth is not recorded in the Bible, December 25 corresponds with the traditional date of the winter solstice on the Roman calendar.

As recounted in the Bible’s New Testament, the Christmas narrative aligns with messianic prophecies told in the Old Testament. It was said that Jesus’s mother, Mary, would conceive through immaculate conception and that He would be born in a manager in Bethlehem. Mary and her husband Joseph, though originally from the town of Nazareth in Galilee, were on a journey to Bethlehem to fulfill census requirements decreed by Caesar Augustus. Once in Bethlehem, there was no room for them at the inn, only finding respite in a stable where Jesus would be born. The angels proclaimed the good news of the promised Saviour’s birth to lowly shepherds who then spread the word.

For many people, Christmas is not celebrated as a religious holiday but rather as a cultural holiday full of traditional celebrations with friends and family.

Many traditions accompany the Christmas holiday, such as giving presents, frequently associated with a figure named Santa Claus. Other traditions include the sending of cards to family and friends, parties with good food and drink, and the singing of carols and other songs.

On behalf of the IDEA Committee, Merry Christmas to all celebrating! “Glory to God in the highest, and on earth peace among those whom He is pleased!” (Luke 2:14 ESV). 

Kwanzaa: December 26 to January 1, 2025

Kwanzaa is an African American cultural holiday that is embraced in Canada and across the globe. The holiday is dedicated to celebrating African family, community and culture. Dr. Maulana Karenga, the founder of Kwanzaa and a member of the organization Us, established the holiday in 1966–67 as a response to race riots in Los Angeles, aiming to affirm African American culture and foster unity.

Celebrated from December 26 to January 1, Kwanzaa derives its name from Swahili, meaning “first fruits,” and is characterized by a seven-day observance aligning with the seven principles of Nguzo Saba: umoja (unity), kujichagulia (self-determination), ujima (collective work and responsibility), ujamaa (co-operative economics), nia (purpose), kuumba (creativity), and imani (faith). Symbolism during Kwanzaa includes seven community values represented by symbols such as a straw mat, fruits, vegetables, corn, a cup, a kinara with seven candles and homemade gifts. Kwanzaa, spanning seven days, culminates in a vibrant December 31 celebration marked by gatherings in colourful African attire, a festive feast called karamu, and lively music, dance and singing, while the final day, January 1, is quieter and allows reflection on personal goals and aspirations for the upcoming year.

Orthodox Christmas: January 7, 2025

Orthodox Christmas is observed on January 7 by Eastern Orthodox Christians, marking the birth of Jesus Christ. It’s observed as per the Julian calendar, not the Gregorian calendar. This holiday is considered one of the most important in the Orthodox Christian calendar, marked by sacred rites, holy liturgies, and family gatherings. The tradition of observing Orthodox Christmas was carried over to Canada by immigrants from Eastern European countries such as Russia, Ukraine, Serbia, and Greece, amongst others. It continues to thrive in diverse, multicultural Canadian society today.

This November, we recognize Indigenous Disability Awareness Month (IDAM) and reflect on the unique experiences and contributions of Indigenous people with disabilities. IDAM was established by Indigenous Disability Canada and the British Columbia Aboriginal Network on Disability Society (BCANDS) in 2015. IDAM is dedicated to raising awareness of the social, economic and cultural contributions that Indigenous persons with disabilities bring to their communities while also highlighting the unique challenges they face.

Over 30 percent of Indigenous Canadians aged 15 and over experience some form of disability, a rate higher than the general Canadian population. This reality underscores the urgent need for inclusive services that address both disability and the additional barriers Indigenous persons face—such as systemic discrimination, lack of childcare, transportation and challenges in accessing culturally appropriate support. These barriers are rooted in the social determinants of health. They are further compounded by a history of colonial violence, which has led to complex, intersectional challenges impacting mental and physical health.

For details on supporting IDAM or further information on the awareness month, please visit https://www.bcands.bc.ca/.

Remembrance Day, observed on November 11, is a solemn occasion dedicated to honouring the sacrifices made by members of the armed forces who fought in wars and conflicts around the world. Originally established to mark the end of World War I in 1918, the day serves as a poignant reminder of the bravery and courage of those who served, particularly in the face of the devastating impacts of warfare. Ceremonies often include moments of silence at 11 a.m., symbolizing the moment the armistice was signed and the wearing of poppies, inspired by the famous war poem “In Flanders Fields.”

Beyond its historical roots, Remembrance Day fosters reflection on the broader themes of peace and reconciliation. It encourages societies to consider the costs of conflict and the importance of working toward a more peaceful future. Communities gather in various ways—from formal ceremonies at war memorials to personal reflections at home—emphasizing a collective commitment to remember and honour those who served. The day serves as a tribute to veterans and a call to uphold the values of freedom and peace that they fought to protect.

Here in the Durham Region, we have a wide range of different events that take place throughout the region. This includes but is not limited to the Oshawa Remembrance Day Parade and Convoy of Remembrance, the Ajax Remembrance Day Ceremony, and the Intrepid Park (Camp X) Canadian Forces Ceremony.

World Diabetes Day was created in 1991 by IDF and the World Health Organization as a response to the escalating threat posed by diabetes. While 1 in 10 adults have diabetes, many are still undiagnosed, and there is a growing number of children diagnosed with diabetes. Diabetes is a chronic health condition that affects how the body turns food into energy. Normally, sugar comes from carbohydrates needed to fuel the body’s cells. When the pancreas does not develop enough insulin, or any at all, too much blood sugar stays in the bloodstream.

Serious health problems such as heart disease, nerve damage and eye issues can occur if lifestyle changes are not made and/or medication taken. There are multiple types of diabetes, but the most common are Type 1 and Type 2. Type 1 or juvenile diabetes is often genetic, and the rate of diagnosis is lower. Type 2, or adult-onset diabetes, can sometimes be prevented by adopting or maintaining healthy lifestyle choices. We wear blue for World Diabetes Day!

Andrea B., Family Engagement Program Manager, shares her experience of living with diabetes and the way it has shaped her resiliency and advocacy.

“I was only seven years old when doctors told me I had type 1 diabetes and would need to give myself needles – multiple times a day – just to stay alive. At that moment, I was so sick that I would have done anything to feel better. As the weeks wore on and I started to feel better, there were moments when life seemed unfair. I was diagnosed in October and remember how tough Halloween felt that year. All my friends raced home to eat candy, and I came home and gave mine to my brother.

Allowing me to return to school after my diagnosis must have been hard for my mom. She had just learned how to be my pancreas. It was hard enough when I was at home, balancing my food, exercise and medication. She had a lot of sleepless nights checking my sugar just to make sure I would wake up in the morning. One of the first things my mom did was look for a parent support group. Not finding one locally, she created one and started working for the Canadian Diabetes Association! Within a few years, she had developed a youth group as well. I guess family support and engagement runs in my genes!

Technology wasn’t what it is today. It was 6-10 finger pokes a day to test my blood sugar and strict medication dosing. I was a pretty independent kid, though. I did not want anything to stop me. In fact, when the nurses wanted me to practice giving myself a needle using an orange, I refused and made them teach me to do it on myself right away! That fierce independence has served me well over the years. I had to learn to advocate for myself when offered treats I could not have or when my blood sugar felt too high or too low, and I needed to go to the office for a shot or a snack. I wish I could tell that little girl how amazing technology is now. No more finger pokes since my phone tracks my blood sugar in real time. My insulin pump is my new pancreas and allows me to eat what I want and be active (or not!) and still stay in control. Despite the difficult road I’ve tread, I can now demonstrate the importance of resiliency and advocacy to my own children.”

World Prematurity Day is a day to raise awareness of premature births and an opportunity to work with partners around the world to prevent it. The average pregnancy lasts 37 to 42 weeks, marking 37 weeks of pregnancy as reaching full-term and births before 37 weeks are considered preterm. Nearly 8% of all Canadian babies are born prematurely. Preterm babies have smaller body lengths, lower birth weights and are at risk for increased health and developmental challenges.

The likelihood of a Neonatal Intensive Care Unit (NICU) stay is high, and the duration of the stay will depend on the length of the pregnancy and the health of the baby. Many of these preterm babies will go on to have physical, communication and developmental needs. There is also a huge need for support for parents of preterm babies who will experience the difficulties of NICU life and the possibilities of navigating new medical diagnoses, posing a risk for both short-term and long-term mental health challenges. On World Prematurity Day, we wear purple to show our support.

Client Story:

Connor in the Neonatal Intensive Care Unit (NICU).

“Connor was born 13 weeks premature at 27 weeks gestation, weighing only 2.7lbs and began his journey in the Neonatal Intensive Care Unit (NICU). The very first few days were scary as doctors were uncertain if he would survive the first 48 hours. His lungs were so underdeveloped he was placed on an oscillator jet to help him breathe over the next couple of weeks. During this time, we were not able to hold Connor and physical contact was kept to a minimum because of how sensitive his skin was. During this time, doctors were keeping a close eye on his head circumference as the size of his head was growing at a faster rate than it should have been.

After many head ultrasounds, it was discovered that Connor had suffered bilateral grade 3 and 4 brain bleeds resulting in Hydrocephalus. Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid occurs within the brain. This typically causes increased pressure inside the skull. It was determined that Connor would need surgery to place a VP shunt to help with the draining of the fluid buildup. At this time, there was a major concern he was still too little and weak to undergo such a surgery, so doctors decided to wait and continue to monitor his head circumference on a week-to-week basis until he was both strong and big enough to undergo the surgery.

A month after birth, Connor was transferred to Sick Kids Hospital to undergo surgery to place a VP shunt, but before they could perform surgery, he became extremely ill. Connor had developed Necrotizing Enterocolitis (NEC), an infection which can be deadly for premature babies. Luckily, it was caught quickly and only needed to be treated with medication. At 34 weeks gestation, Connor had his surgery and VP shunt placed. After 120 days in the NICU, he was able to come home.

Due to Connor’s prematurity, he was placed on a waiting list for early intervention. When Connor was only eight months old, he started physiotherapy (PT) and occupational therapy (OT) at Grandview Kids with two amazing therapists! At 12 months, he was diagnosed with right-sided Hemiplegia Cerebral Palsy. When it came to hitting his milestones, he was a little behind, but he ended up meeting them in time and with hard work. He wore ankle-foot orthotics (AFOs), received Botox injections to weaken the spastic muscles and had many hours of PT and OT. In 2021, Connor had Selective Dorsal Rhizotomy (SDR) surgery to remove the spasticity from his legs. Connor is a smart, funny and strong warrior who is now nine years old and loves Elvis, Marvel, Star Wars and video games. He accomplishes anything he puts his mind to; he doesn’t let anything get in the way of what he wants!”