Awareness Days

September 30 marks the National Day for Truth and Reconciliation, also known as Orange Shirt Day. This day honours the children who never returned home and the Survivors of residential schools, along with their families and communities. It is a time to reflect on the tragic and painful history of the residential school system and the lasting impacts it continues to have across generations. Public commemoration is a vital part of the reconciliation process, reminding all Canadians of the need to learn, listen and act.

The discovery of unmarked graves and the stories of Survivors have led to growing calls for accountability and systemic change. In 2013, the not-for-profit Orange Shirt Society first honoured this day, inspired by the story of Phyllis Webstad, whose orange shirt was taken from her on her first day at residential school. The orange shirt has since become a symbol of the stripping away of culture, freedom and self-esteem experienced by Indigenous children.

September is the time of year when children were taken from their homes to attend residential schools. This date of significance offers all Canadians an opportunity to engage in meaningful reflection and commit to anti-racism and reconciliation in their schools, workplaces and communities.

At Grandview Kids, truth and reconciliation are honoured monthly. Each all-staff meeting begins with a “Reconcili-Action Moment,” where a member of the Inclusion Diversity Equity and Accessibility (IDEA) Committee shares a story or reflection to celebrate the contributions of Indigenous Peoples and inspire continued learning and action.

Let this day serve as a reminder that reconciliation is not a one-day event but an ongoing journey we all must take together.

Ways to honour the National Day for Truth and Reconciliation

Learn more about Orange Shirt Day
Visit the Assembly of First Nations
Learn more on the Inuit Tapiriit Kanatami or Métis National Council
Find your local Friendship Centre

Use Free Government of Canada Visuals and Assets:

Support Resources:

Former residential school students can call 1-866-925-4419 for emotional crisis referral services and information on other health supports from the Government of Canada.

Indigenous Peoples across Canada can contact the Hope for Wellness Help Line for counselling and crisis intervention 24 hours a day, seven days a week.

Call the toll-free Help Line at 1-855-242-3310 or connect to the online chat (Please use Google Chrome).

In September, we acknowledge International Pain Awareness Month, Chiari Malformation Awareness Month, Charcot Marie Tooth Disease Awareness Month, Childhood Cancer Awareness Month, Duchenne Awareness Month, World Duchenne Day, World Physiotherapy Day, International Literacy Day, Fetal Alcohol Syndrome Day, Worldwide Cystic Fibrosis Day, Myotonic Dystrophy Day, National IT Professionals Day, World Chronic Myeloid Leukemia Day, Rosh Hashanah, Gender Equality Week, International Day of Sign Language and Orange Shirt Day.

Below, read more about each date of significance, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

International Pain Awareness Month

Pain is something we all understand until it does not go away. Until it becomes a constant companion. Until it turns ordinary tasks into overwhelming challenges.

International Pain Awareness Month is not just about recognizing the existence of chronic pain. It is about understanding the complex realities faced by those who live with it every day. Imagine waking up feeling as tired as when you went to sleep. Moving through your day as though gravity weighs heavier on you than it does for others. You look fine. You smile. You work. But beneath the surface, your body is in a battle you did not choose and cannot walk away from.

Chronic pain does not always announce itself. There are no bandages, crutches or dramatic warning signs. It is often invisible, which means people who live with it also have to fight to be believed. It affects every part of life from relationships to employment, from sleep to self-worth. It can limit mobility, interfere with goals and create a sense of isolation that is hard to describe. Yet it is incredibly common, affecting more than one in five people worldwide.

This month reminds us that pain is more than a symptom. It is a human experience. It calls for care, respect and support, not skepticism, silence or shame. Pain is deeply personal, but the response to it should be collective. When we become more aware of what others may be carrying, we can build workplaces, schools, clinics and communities that are more compassionate and inclusive. Awareness leads to action. Action leads to better policies, better care, better lives and stronger communities.

This September, let’s:

Be patient with those who move slower or cancel plans without explanation.
Push for health systems that treat pain seriously and holistically.
Amplify awareness, because someone you love is likely living with pain whether you know it or not.

Not everything that hurts is visible. But everything that hurts deserves attention.

Learn more about International Pain Awareness Month on our blog. Click here to read about Grandview Kids Ambassador, Suraj’s experience living with invisible pain caused by Somatization.

Chiari Malformation Awareness Month

September is Chiari Malformation Awareness Month, a time to recognize and better understand a condition that affects thousands of individuals and families.

Chiari malformation is a congenital condition that affects the lower back of the skull where the brain and spinal cord connect. In people with this condition, brain tissue extends into the spinal canal, placing pressure on the brain and potentially causing symptoms such as headaches, neck pain and reduced strength in the arms and hands. The severity and type of symptoms can vary widely, making diagnosis and treatment difficult until specific signs appear.

Every person’s experience with Chiari malformation is different. There are four types of Chiari, each indicating the progression of the condition and the severity of symptoms. Some people develop symptoms early in life, while others may never experience them. For those with symptomatic Chiari, the effects can be felt every day.

Muscle weakness and ongoing pain can severely limit participation in physical activities. Even standing for long periods can become a challenge. Some individuals experience incontinence, which can disrupt daily routines and affect quality of life. In more serious cases, people may lose a degree of independence or develop permanent disabilities. Many rely on mobility aids such as walkers, canes or wheelchairs, while others require neck braces or supportive devices to help hold their head up.

Charcot-Marie-Tooth Awareness Month

Charcot-Marie-Tooth (CMT) Awareness Month, observed each September, highlights the impact of this hereditary neurological disorder that affects more than 2.5 million people worldwide. The campaign aims to educate the public and highlight the daily challenges faced by individuals with CMT, such as muscle weakness, balance difficulties, mobility limitations and chronic pain. Despite being one of the most common inherited neurological conditions, CMT remains widely misunderstood and underfunded. This month honours the resilience of those living with CMT and their families while advocating for greater investment in research, improved care and ultimately the development of effective treatments to enhance the quality of life for those with this condition.

Learn more about Charcot-Marie-Tooth Disease Awareness Month on our blog. Click here to read about Grandview Kids Ambassador and Peer Navigator Ella W.’s lived experience with Charcot-Marie-Tooth disease.

Childhood Cancer Awareness Month

Childhood Cancer Awareness Month, observed each September, brings attention to the impact of paediatric cancer and the urgent need for more research, support and funding. Despite being a leading cause of disease-related death in children, childhood cancer receives only about four per cent of overall cancer research funding. This month honours the strength of young patients and their families while advocating for greater investment in research to develop safer and more effective treatments and ultimately find cures.

Duchenne Awareness Month

This September, we raise our voices for those living with Duchenne muscular dystrophy (DMD), a rare and progressive genetic disorder that primarily affects boys and leads to severe muscle degeneration over time. DMD is caused by mutations in the dystrophin gene, which plays a critical role in maintaining muscle strength and integrity. Although the condition is life-limiting, advances in care and research are improving outcomes and offering families hope.

Symptoms of DMD typically appear between the ages of two and five. Early signs may include frequent falls, difficulty running or climbing stairs and visibly enlarged calf muscles. As the disease progresses, most individuals lose the ability to walk by their early teens and face serious heart and lung complications in early adulthood. Greater awareness, early diagnosis and ongoing research are key to improving the quality of life for those affected and working toward a future with better treatments.

How is Duchenne different from Myotonic Dystrophy (DM)?

Understanding the differences between Duchenne muscular dystrophy (DMD) and myotonic dystrophy (DM) is essential for accurate diagnosis, proper care and effective advocacy. While both are forms of muscular dystrophy, they vary significantly in terms of onset, progression, genetic cause and impact on the body.

DMD typically begins in early childhood, usually between the ages of two and five. It progresses rapidly and severely, primarily affecting the muscles, heart and lungs. It is caused by a mutation in the dystrophin gene and is inherited in an X-linked pattern, meaning it mostly affects boys. In contrast, DM often appears during adolescence or adulthood and progresses more slowly. It is caused by a repeat expansion in the DMPK or CNBP genes and follows an autosomal dominant inheritance pattern, affecting both males and females. While both conditions can affect muscle strength and organ function, DM may also involve the eyes, brain and emotional or cognitive functioning, whereas DMD may be associated with learning difficulties.

Spread Awareness about Duchenne by:

Wear gold or light up your space in gold
Use hashtags #DuchenneAwarenessMonth and #KnowTheDifference
Support organizations working toward treatments and inclusive care
Learn more at defeatduchenne.ca/about-duchenne

World Duchenne Day: September 7

September is Duchenne Awareness Month in Canada, and September 7, 2025, marks the 12th annual World Duchenne Awareness Day. This year’s theme, Family: The Heart of Care, honours the essential role families play in supporting individuals affected by Duchenne and Becker muscular dystrophy.

Landmarks across the country will be lit in red to help raise awareness and show support for the Duchenne community.

World Physiotherapy Day: September 8

World Physiotherapy Day is observed every year on September 8. In 2025, the theme is healthy aging, with a focus on preventing falls and frailty.

The day highlights the unity and strength of the global physiotherapy community. It is an opportunity to recognize the vital work physiotherapists do for their patients and communities. World Physiotherapy uses this day to support member organizations in promoting the profession and advancing their knowledge and expertise.

International Literacy Day: September 8

International Literacy Day takes place on September 8 and highlights the importance of literacy for all. The day is observed by UNESCO, the United Nations Educational, Scientific and Cultural Organization, as part of its mission to promote education and foster peace through intellectual solidarity. The theme for 2025 is Promoting literacy in the digital age.

With the growing digitization of data and information, literacy is more important than ever. Traditional literacy skills now extend to digital platforms and are often necessary to access health services, secure employment and stay connected with loved ones. For the 739 million adults and young people who lack basic literacy skills, barriers to communication and essential services can lead to isolation and a reduced quality of life. The critical thinking developed through reading helps people navigate everyday challenges.

Reading is more than a source of enjoyment. It opens up the world, builds connection and helps individuals think through problems and gain essential life skills.

Fetal Alcohol Syndrome Day: September 9

Each year on September 9, Fetal Alcohol Syndrome Day (FASD) Awareness Day focuses on supporting individuals with fetal alcohol spectrum disorder and promoting education about the importance of alcohol-free pregnancies. The 2025 theme is Everyone Plays a Part: Take Action! This message encourages collective responsibility and calls on everyone to help create meaningful change around alcohol use during pregnancy.

Alcohol consumption during pregnancy can cause physical, behavioural and cognitive impairments in babies that can last a lifetime. There is no proven safe amount of alcohol to drink during pregnancy. Support for pregnant individuals struggling with alcohol addiction is available through local hospitals and community groups such as Alcoholics Anonymous and Al-Anon Family and Friends.

Children exposed to alcohol before birth may experience challenges with memory, switching between tasks, mental health and daily life skills.

For more information on FASD Awareness Day and how to support individuals and families, visit https://canfasd.ca/fasd-awareness-month/.

World Suicide Prevention Day: September 10

September 10 is World Suicide Prevention Day. Each year, more than 700,000 lives are lost to suicide worldwide, deeply affecting families, friends and communities beyond the numbers. Suicide is a complex issue with significant social, emotional and economic impacts, making it one of the most pressing challenges in global mental health.

Changing the conversation around suicide is essential. By encouraging honest and open dialogue, we can break down stigma, raise awareness and create supportive environments where people feel safe to reach out. Through compassion and connection, we can build communities that foster hope and promote mental wellness for all.

Worldwide Cystic Fibrosis Day: September 13

Worldwide Cystic Fibrosis Day is observed annually on September 8 to raise awareness about cystic fibrosis, a rare genetic disorder that primarily affects the lungs and digestive system. The disease interferes with the normal function of cells that produce mucus, sweat and digestive fluids, causing these secretions to become thick and sticky. This leads to serious respiratory and digestive challenges, infections and long-term health complications.

Cystic fibrosis was first identified in 1938 by Dr. Dorothy Andersen, who linked the deaths of malnourished children to the condition. Since then, improvements in medical care, early diagnosis and treatment have significantly increased the life expectancy and quality of life for people living with cystic fibrosis. While there is no cure, ongoing research continues to drive progress. Worldwide Cystic Fibrosis Day is an opportunity to raise awareness, support affected families and encourage further investment in research and care.

Myotonic Dystrophy Day: September 15

September 15 marks Myotonic Dystrophy Day, a day to raise awareness for a rare inherited disorder that affects muscles and multiple systems including the heart, lungs, eyes and brain.

Myotonic dystrophy (MD) is the most common form of adult-onset muscular dystrophy, yet it remains widely underdiagnosed. It is caused by a repeating DNA segment often referred to as a “genetic echo,” which can worsen across generations. Symptoms may include muscle stiffness, fatigue, breathing issues and cognitive challenges. Many adults with MD, especially those with type 2 (MD2), can go years without a diagnosis. Symptoms such as tiredness, mild muscle weakness, or stiffness are often mistaken for signs of normal aging or unrelated conditions.

Awareness is essential. DM is frequently misdiagnosed and can lead to life-threatening complications, particularly in response to certain forms of anesthesia. Increased awareness supports research, improves care and helps prepare patients and clinicians for participation in clinical trials.

Since 2021, landmarks around the world have lit up in green for Myotonic Dystrophy Day, from castles in the United Kingdom to bridges in Australia. This year, more than 60 global organisations are joining forces to educate clinical teams and empower patients.

You can help by wearing green, lighting up your space and sharing facts and stories using #MyotonicDystrophyAwareness. Support patient registries, advocacy groups and community education efforts to make a lasting impact.

On the Grandview Kids blog, Grandview mom Mallory shares her and her daughter Deliah’s experience with Myotonic Dystrophy Type 1 and the transformative journey they have taken through Grandview Kids. Click here to read Deliah’s story.

World Lymphoma Awareness Day: September 15

World Lymphoma Awareness Day is held every year on September 15. It is a global initiative led by the Lymphoma Coalition, a non-profit network of 83 lymphoma patient groups across 52 countries.

Lymphoma is a group of blood and lymphatic system cancers that develop from lymphocytes, a type of white blood cell. It is a potentially life-threatening disease and is increasing in incidence around the world.

A global patient survey conducted in 2008 revealed major gaps in public understanding. Only 49 per cent of respondents said they knew what lymph nodes do. More than half reported knowing little or nothing about lymphoma. Two-thirds did not know lymphoma is a type of cancer or that it has one of the fastest rising incidence rates globally. Ninety per cent believed not enough is being done to fund lymphoma research.

Raising awareness helps people better recognize the signs and symptoms of lymphoma, leading to earlier diagnosis and more timely treatment. It also empowers patients and families to seek care from specialists and access the latest support, information and treatment options.

National IT Professionals Day: September 16

Started in 2015 by SolarWinds, a provider of hybrid IT infrastructure management software, National IT Professionals Day celebrates the information technology experts who keep businesses running. The day honours all IT professionals, regardless of their discipline. This includes network engineers, database administrators, system administrators, developers, IT support technicians and information security specialists.

Observed every year on September 16, the day is an opportunity to recognize and thank IT professionals for their hard work and expertise. Celebrate by expressing appreciation to those working in IT or by taking the opportunity to learn more about the field. Consider signing up for an online course or reading a book about information technology.

World Chronic Myeloid Lukemia (CML) Day: September 22

World Chronic Myeloid Leukemia (CML) Day is observed globally on September 22. It raises awareness about this rare type of blood cancer caused by a genetic mutation involving chromosomes 9 and 22. The day is a time to reflect on the experiences of those living with CML, including challenges related to access to care, stigma and financial hardship faced by patients and their families.

In people with CML, the bone marrow produces too many immature white blood cells that do not function properly. Early diagnosis and treatment are key to managing the disease. CML Day also recognizes progress in treatment. While a cure is still being pursued, advancements in therapies and medicines have allowed many patients to live strong and healthy lives.

The goal of CML Day is to raise awareness and advocate for the support systems patients and families need. Education and recognition remain core to this observance. The theme for September 22, 2025, is “Equity in action: Leaving no CML patient behind.”

Rosh Hashanah: September 22

This year Rosh Hashanah begins on the evening of Monday, September 22, 2025 and concludes after nightfall on Wednesday, September 24. In the Hebrew calendar it falls on 1–2 Tishrei, 5786. But this is not just another holiday, it marks the birthday of the universe.

Rosh Hashanah, which literally means “head of the year” in Hebrew (ראש השנה), is the Jewish New Year. It commemorates the creation of Adam and Eve and, by extension, all of humanity. It also marks day one of the Days of Awe (Yamim Noraim), a 10‑day period of introspection that culminates with Yom Kippur. The day is also known as Yom Hazikaron (Day of Remembrance) and Yom Hadin (Day of Judgement), reflecting the belief that God reviews every person’s deeds and decides their fate for the coming year.

This sacred observance is marked by lighting candles in the evenings, enjoying festive meals with sweet foods, attending prayer services that include the sounding of the ram’s horn (shofar) on both mornings and refraining from creative work.

Gender Equality Week: September 22 to 28

Gender Equality Week is observed in Canada during the fourth week of September and highlights the importance of creating inclusive spaces where everyone can thrive regardless of gender identity or expression. It is a time to reflect on progress made toward equality and the work that remains to address systemic barriers. This week encourages all Canadians to take action toward building a more just and equitable society.

International Day of Sign Languages: September 23

September 23 marks the International Day of Sign Languages, a United Nations recognized occasion that highlights the importance of sign languages in upholding the human rights of Deaf individuals and sign language users around the world. The day aims to raise awareness of the unique experiences and challenges faced by the Deaf community while celebrating the cultural and linguistic richness of sign languages. Sign language is more than a means of communication. It fosters inclusion, connection and full participation in society. It is also a gateway to a vibrant cultural identity that deserves recognition and respect. By promoting and embracing sign languages, we help build a more inclusive, accessible and equitable world where everyone has the opportunity to be heard and understood.

Orange Shirt Day: September 30

Orange Shirt Day, observed on September 30, is an Indigenous-led commemoration that honours the experiences of residential school survivors and their families. The orange shirt has become a symbol of the loss of culture, freedom and self-esteem that many Indigenous children experienced in these institutions. The phrase “Every Child Matters” emphasizes the importance of acknowledging past injustices and committing to reconciliation.

The date was chosen because it aligns with the time of year when Indigenous children were removed from their homes to attend residential schools. Wearing an orange shirt on this day is a powerful act of solidarity and a reminder of the need to stand against racism and bullying. It is also a call for First Nations, local governments, schools and communities to come together in the spirit of reconciliation and hope for future generations.

At just 21 years old, Ella Wiley is already making a profound impact on the world around her. A fourth-year pre-med student at York University, majoring in Health Studies with a minor in Life Sciences in Society, Ella is determined to become a paediatric neurologist. This dream is shaped not only by her academic passions but also by her lived experience with a rare condition called Charcot-Marie-Tooth Disease (CMT).

Ella’s journey began at the age of 3, when a preschool teacher noticed she was struggling with mobility, particularly how she would carefully walk down the stairs with both feet on each step. That observation led to a referral to Grandview Kids, where Ella’s sister, Anna, was already receiving speech and occupational therapies. Though Ella started with physiotherapy and occupational therapy at Grandview Kids, it would be more than a decade before she received a diagnosis.

“I wasn’t officially diagnosed with CMT until I was 17,” Ella explains. “We were at Markham Stouffville Hospital and the paediatric doctor noticed something unusual. She told me she’d only read about CMT during her residency, but she’d never actually seen a case before.”

CMT is a rare neurological disorder that affects the peripheral nerves, which control the muscles. Ella explains that CMT affects the nerves, leading to muscle weakness, balance issues and changes in the feet and hands. It’s not life-threatening, but it influences mobility and physical endurance. For Ella, that meant ongoing mobility challenges and unexplained pain. “Growing up, everyone just thought this was the way I was. Whenever we were on long walks or vacations, my muscles and bones would shift, my feet would swell and I’d be in pain. We just planned around it,” she says.

With no cure for CMT, Ella learned to manage her symptoms. She does daily strengthening exercises using resistance bands, especially for her ankles and finds working out regularly helps maintain muscle tone. Orthotics and ankle-foot orthoses (AFOs) have also made a huge difference. “I can walk longer distances without pain now,” Ella beams. “There are different types of CMT, and I have one of the milder versions. I’ve met people who can’t walk at all and need surgeries to rotate their feet. It really puts things in perspective.”

Ella credits Grandview Kids not just for giving her the physical tools to improve her mobility, but for providing a community that understood her. “It wasn’t just about therapy – it was about feeling supported,” she says. “They taught me how to walk up and down the stairs properly and gave me more control over how I move. But the biggest impact was the environment. Grandview Kids was always welcoming, uplifting and filled with people who just ‘get it.’”

Her experience at Grandview Kids extended beyond accessing services. She returned as a sibling and former client, participating in Family Engagement Team activities and events that helped her learn to advocate for herself and others. “When you’re around people who truly understand what you’re going through, even without saying it, it gives you the strength you didn’t know you needed,” Ella shares.

Over the years, Ella has faced many physical challenges but receiving a diagnosis brought clarity and empowerment. “It gave me an actual reason for the struggles I’d faced,” she says. “Now I’m more motivated to speak up and advocate for what I need.” She also acknowledges her family’s unwavering support, especially her sister Reggie, who instinctively offers her arm when walking downhill so she can steady herself.

Outside her studies, Ella finds joy in reading, singing and playing the piano and harp. She, Reggie and Anna share a love of K-pop and attending concerts. The Wiley sisters support each other through music, laughter and life’s hills, both literal and figurative. Ella allows herself to find beauty and meaning in the things she enjoys. Reading has become an opportunity to not just immerse herself in a good plot but also discover characters that resonate and give her a strong sense of belonging. Ella illustrates that finding these characters “make me feel like I matter, that I’m worthy – and that representation truly matters.”

Now serving as a Grandview Kids Ambassador, Ella wants to be a representative for other children and youth. She offers powerful advice to other young people navigating disability and uncertainty:

“To anyone who’s living with a disability and unsure about what’s ahead: Please know that you are not alone, and your path—while it may look different—is still full of possibilities. You are capable, worthy, and deserving of joy and success.

Start by learning to advocate for yourself—what your needs are, what helps you thrive, and who your support people are. Build a community that uplifts you. Physically, do what you can to care for your body in a way that feels right for you. Mentally and emotionally, give yourself grace. It’s okay to have hard days.”

Before Delilah was born, her mom, Mallory, knew something wasn’t quite right about herself, but she could not explain it. There were subtle signs beginning in her teenage years that were mostly ignored or misunderstood. Mallory would get sudden hand cramps while opening jars. Her eyes wouldn’t fully close while she slept, leading to damage and scarring on her eyes. Her facial muscles were weak, making it hard to close her mouth. Mallory would fatigue quickly from short walks. People saw her as lazy, unmotivated or even unusual, given the uninterested appearance caused by her facial weakness. No one thought it could be something deeper.

After being married for some time, Daniel and Mallory were ready to begin family planning shortly after graduating from college. They were excitedly awaiting the birth of their first child. The pregnancy had some subtle abnormalities. Mallory did not feel her baby kicking, and she had a vast amount of amniotic fluid building up, leading to her water breaking prematurely at 33 weeks. Delilah was born three days later and faced a tough start. She had to be resuscitated, wasn’t breathing on her own and a week later was limp in her parents’ arms and considered very “floppy.”

Delilah was transferred to SickKids Hospital for extra support as she couldn’t swallow, had no gag reflex, needed feeding tubes and air support. A neurologist at SickKids took one look at Mallory, noting her unique facial structures, and was confident that Delilah’s symptoms were due to a form of Muscular Dystrophy called “Myotonic Dystrophy Type 1” (“DM,” from the Latin term “dystrophia myotonica”). On March 21, 2022, Delilah was officially diagnosed with Congenital Myotonic Dystrophy Type 1. DM is a progressive, inherited neuromuscular disorder. “Myotonic” means difficulty releasing muscles once they contract. “Dystrophy” refers to the gradual weakening of all muscles over time.

Despite her parents’ optimism about her growth and progress, they were told she would either need a trach and a feeding tube indefinitely, or they could choose to let her pass in palliative care. They were given two weeks to decide. This was a terrifying and heartbreaking time for Mallory and Daniel, given the uncertainty their family was now facing. Miraculously, Delilah began coughing, swallowing and developed a gag reflex. Once the two-week period concluded, instead of meeting the doctors regarding a decision, Delilah graduated from the neonatal intensive care unit (NICU).

After Delilah was formally diagnosed, Mallory received her own genetic test back, and it revealed that she indeed had DM. The diagnosis changed everything. Suddenly, all of Mallory’s struggles as a teen made sense. The exhaustion, brain fog, muscle weakness and sadness of being misunderstood. The diagnosis brought grief and validation. Mallory wasn’t lazy or weak. She had a progressive neuromuscular condition. It was real, and her daughter’s life depended on knowing that.

DM is characterized by repeat extensions in specific genes – cytosine, thymine and guanine, a trinucleotide repeat expansion, with CTG repeats in DM Type 1 and CCTG in DM Type 2. The length of the repeats correlates with the severity of the disorder. A normal number of repeats is up to 35. Mallory’s father was tested and diagnosed with the mildest form of DM with a repeat count of about 50. Mallory’s repeat count was between 300-600. Delilah’s repeat count is a staggering 1300 repeats. Each of them represents the three severities of Myotonic Dystrophy: Mild, Classic and Congenital. If the DM gene is passed on to a child, it will often present more severely than in the parent who had it. This diagnosis story is very familiar to other families living with Myotonic Dystrophy, and it emphasizes the importance of being aware and recognizing milder symptoms.

Early diagnosis brought vital early intervention in the form of networking, information, research, support and therapies. Delilah was referred to Grandview Kids and connected to a team of specialists who rallied around her: physiotherapy (PT), occupational therapy (OT), speech-language pathology (SLP), social work and more. From learning how to hold her head up to crawling and walking with a walker, Delilah’s every milestone was met with cheers from “Team Delilah.” Speech therapy introduced her to an augmentative and alternative communication (AAC) device so she could express her needs, as she is non-verbal. OT helps with fine motor skills and feeding. PT supports her balance, strength and walking goals. At Grandview Kids, she is more than just a textbook diagnosis.

Deliah’s AAC and Ankle Foot Orthosis (AFO)

“Delilah lights up when she sees her therapists,” Mallory says. “They don’t need to read notes; they know her. They care about her. They care about us,” recounting how the therapists even ask Daniel and Mallory about their personal well-being.

Delilah’s goals are to walk and talk. She shows it through her everyday determination. She’s pulling herself up into a standing position against walls, taking side steps and has even taken an independent step towards her parents. Shortly after Delilah’s birth, Daniel wrote to his workplace to explain his daughter’s condition. To their surprise, the company’s owner responded, explaining how intimately aware he was of DM and its impact, as his own daughter and late wife had congenital and classic DM. His daughter is now 40, doing well, working and living as independently as she can. This has been a large contributing factor to the family’s optimism and inspiration for Delilah’s future.

It may not be tomorrow, but hope is growing for Daniel, Mallory and Delilah. Every day is a challenge. There are appointments with neurologists, cardiologists, ophthalmologists and respirologists. There are grant forms, funding applications and sleepless nights. Alongside the hardships, there is also laughter, progress and a deep sense of community.

9-year-old Suraj wakes up and quietly listens to his body. Some days, his legs and arms feel strong. Other days, they don’t move at all. To the outside world, it might seem confusing. He looks fine, but inside, Suraj’s brain is playing tricks on him. These tricks began after the sudden loss of his maternal grandmother, a very important person in his life and an emotional anchor. His brain reacted to the traumatic stress by signalling it to shut down, telling him that the emotional and mental pain also meant physical pain.

What followed were years of uncertainty. At just five years old, Suraj experienced his first episode of paralysis. He woke up to find his limbs lifeless, unable to walk or raise a finger. Doctors initially believed that he was experiencing a stroke, but after rushing to multiple hospitals and specialists, he was eventually diagnosed with Somatization, a complex condition where emotional pain and anxiety take a physical form. His brain, overwhelmed by trauma and fear, began sending false danger signals to his body.

For two years, Suraj lived in a wheelchair on and off. The paralysis came and went, sometimes for minutes, sometimes for days. He missed out on school, time with friends and the little moments in between that most kids take for granted. At times, he reverted to “baby talk,” overwhelmed by the stress in his body and mind. The pain signals are loud and scary. A small scratch on his arm would feel like a fracture. Writing a page in school could lead to severe tingling, heaviness and shoulder pain. His body would enter “shutdown mode” as if it were protecting him from a world that felt unsafe.

There were no easy answers. Suraj did not fit neatly into any box. Not quite physical pain, but not quite mental either. Too young for some programs and too complex for others. His family often felt lost while navigating a fragmented healthcare system, chasing therapies and asking questions like “Where do we go? Who understands this?”

With the help of SickKids’ Somatization Program, psychiatrists and his team at Grandview Kids, consisting of an occupational and physiotherapist, Suraj has begun using small but powerful tools. Breathing exercises help calm his brain, gentle sports strengthen his muscles and distraction techniques interrupt his paralysis before it fully sets in. Every step forward was a triumph for his body and spirit.

Now back in school after four years of virtual learning, Suraj still faces daily pain and fatigue. He makes it a point to stay active to keep his muscles working by playing sports like basketball, soccer, swimming, fencing and skateboarding. He’s still on a journey, but he’s also learning how to catch the warning signs and how to talk back to his brain’s false alarms and move through fear and anxiety with courage. Somatization may not be visible. The pain might not show on a scan, but Suraj is proof that invisible pain is as real as inner strength.

For International Pain Awareness Month, Suraj’s journey reminds us of the importance of compassion, awareness and belief. Children and youth who experience pain like his often have it go unnoticed because their pain doesn’t follow the usual expectations. However, with the proper support, understanding of others and a willingness to think outside the box, healing can happen for the body, heart and mind.

International Assistance Dog Week, observed from August 3 to 9, recognizes the dedication of assistance dogs and their trainers, and the critical role these animals play in helping individuals lead more independent lives. While dogs have offered comfort and support to people for centuries, including to wounded soldiers as early as the 1700s, the first formal training of guide dogs for people with vision loss began in California in 1942. Today, assistance dogs are trained to support a wide range of needs, including mobility challenges, autism, hearing impairments, epilepsy, attention-deficit/hyperactivity disorder (ADHD) and anxiety.

What is an Assistance Dog?

An assistance dog or service dog refers to specially trained canines, such as guide dogs and hearing dogs, of any breed that support people with disabilities. Their tasks may include alerting their handler to take medication, providing physical support to those with mobility challenges or performing household duties such as opening cupboards and turning on lights. These dogs may be matched with an individual or work within facilities that support people with special needs.

A therapy dog or emotional support animal, however, is not considered a legally protected assistance dog. While they offer comfort by their presence, they do not perform the specific tasks required under The Accessibility for Ontarians with Disabilities Act and the Ontario Service Dogs Act.

Grandview Kids Archivist and Ability Acceptance presenter Mitchell Daniels, along with Grandview Kids graduate and volunteer Amanda P., recently shared their experiences of living with assistance dogs and the impact these animals have on their daily lives.

Mitchell’s service dog, Sasha, supports him in his work at Grandview Kids and during his Ability Acceptance presentations. As an autism service dog, Sasha provides Mitchell with reliable companionship and practical support. Together, they educate others about the role of service animals and promote understanding of how to appropriately interact with them through their presentations.

“Sasha helps with my self-esteem, confidence and my anxiety.” – Mitchell Daniels, Grandview Kids Archivist and Ability Acceptance Presenter

Amanda has had Charlie since he was eight weeks old. He began his service dog training at 18 months and completed it two years later. Charlie has now been by Amanda’s side for the past eight years. When he’s not working, Charlie enjoys going on adventures, including hiking, swimming, paddleboarding and camping and especially loves rolling in the grass after it rains.

“Charlie has improved my life so much. He makes me feel so happy and has given me a lot of independence. Charlie provides me the ability to go out and do things independently. He has been there for me when I try new things, like rugby. He has even helped me make the friends I have today. Charlie helps calm me down when I am stressed and lays beside me or on my legs. He helps me when my body hurts and is unable to pick up items from the ground” – Amanda P., Grandview Kids Graduate and Volunteer