Awareness 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

In July and August, we acknowledge Canada Day, Guru Purnima, Obon Festival, Civic Holiday, Krishna Janmashtami, Paryushana and Ganesh Chaturthi. Read more about each holiday/celebration below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Canada Day: July 1

Canada Day, celebrated on July 1, marks the anniversary of Confederation in 1867, when Canada became a self-governing Dominion within the British Empire. Canada Day is an opportunity to reflect on what it means to live in this country, while also acknowledging the complex and painful history that has shaped it. As we celebrate the values and freedoms many enjoy, it is equally important to recognize the experiences and contributions of First Nations, Inuit and Métis Peoples. The legacy of residential schools and colonial policies continues to impact Indigenous communities across Canada.

This Canada Day, we are reminded of the importance of listening, learning and committing to reconciliation, so we can move forward in building respectful and meaningful relationships with Indigenous Peoples.

Guru Purnima: July 10

Guru Purnima is a sacred festival that honours and expresses gratitude to our gurus, including teachers, mentors and spiritual guides, who illuminate our lives with knowledge, wisdom and direction. Observed on the full moon day (Purnima) in the Hindu month of Ashadha (June to July), the day holds deep spiritual and cultural significance in Hinduism, Buddhism and Jainism.

The word guru means “dispeller of darkness.” This day offers a chance to reflect on the invaluable role of those who guide us, both personally and professionally.

Let us take a moment to express gratitude to those who have shaped our journey, whether it is a parent, teacher, elder, coach, colleague or spiritual guide.

Obon Festival: July 13 to 15

The Obon festival, also known as Bon, is an annual Japanese tradition that honours and remembers deceased ancestors. It is believed that during Obon, the spirits of ancestors return to visit their living relatives. Families mark the occasion by hanging paper lanterns (chochin) to guide the spirits, performing traditional Obon dances (bon odori), and gathering for family reunions. Many also visit ancestral graves and make food offerings at home altars and temples as a sign of respect and remembrance.

Civic Holiday: August 4

The Civic Holiday is observed on the first Monday of August and serves as a public holiday in several provinces and territories across Canada. While it is not a federally mandated statutory holiday, it provides a welcome day off for many Canadians. The holiday’s name and significance vary by region, reflecting each municipality’s authority to designate its own observance.

Known collectively as the “Civic Holiday” because cities and towns determine how to mark the occasion, it is recognized under various names nationwide. For example, it is called Regatta Day in St. John’s, Newfoundland and Labrador; Terry Fox Day in Manitoba; Saskatchewan Day in Saskatchewan; and British Columbia Day in B.C. In Nova Scotia and Prince Edward Island, it is known as Natal Day.

Other regional names include Simcoe Day in Toronto, Colonel By Day in Ottawa, New Brunswick Day in New Brunswick, Heritage Day in Alberta, Joseph Brant Day in Burlington, Ontario, and Benjamin Vaughan Day in the City of Vaughan, Ontario.

Despite its many names, the Civic Holiday is an opportunity for communities to celebrate local history, culture and contributions, and to take a well-earned mid-summer break.

Krishna Janmashtami: August 16

Krishna Janmashtami is a joyful Hindu festival that celebrates the birth of Lord Krishna, the eighth avatar of Vishnu, revered for his wisdom, compassion and playful spirit. Observed on the eighth day (Ashtami) of the waning moon in the month of Bhadrapada — typically in August or early September — the festival holds deep spiritual and cultural significance.

Lord Krishna’s teachings in the Bhagavad Gita continue to inspire millions, emphasizing duty, devotion and the triumph of good over evil. Traditions include fasting, prayer, midnight celebrations and bhajans, or devotional songs. In many places, the festival also features Dahi Handi, a ritual that involves breaking a pot of curd hung high above the ground. Krishna Janmashtami is often celebrated in community, bringing together family, friends and neighbours in shared joy and devotion.

Paryushana: August 21 to 28

Paryushan Parva is a sacred Jain festival dedicated to introspection, non-violence, truth and forgiveness. Observed over eight to ten days depending on the Jain sect — eight days for Śvētāmbara and ten for Digambara — it is a period of spiritual focus, self-discipline and seeking forgiveness from all living beings.

During Paryushan, followers engage in fasting or observe restricted diets, attend prayer sessions and spiritual lectures and take time for scriptural recitation and inner reflection. The festival emphasizes purification of the soul through self-awareness and non-violence.

The final day is marked by the tradition of Micchami Dukkadam, in which individuals ask forgiveness from others with the message: “If I have caused you any harm knowingly or unknowingly, in thought, word or deed, I seek your forgiveness.”

This message of universal compassion and humility lies at the heart of Jain philosophy, offering a powerful reminder to live with empathy, restraint and a commitment to peace.

Ganesh Chaturthi: August 26

Ganesh Chaturthi is the celebration of the birth of Lord Ganesh, one of Hinduism’s most sacred deities. Lord Ganesh represents intelligence, listening, prosperity and wisdom. He is known for his powerful presence, removing obstacles and the protection of homes.

During Ganesh Chaturthi, Hindus create and install clay idols of the deity (recognizable for having an elephant head), in private homes and public places.

Communal feasts, music, dance and prayer are part of the festivities during the celebration. It is customary during worship for Hindus to offer sweets thought to be favourites of Lord Ganesh such as modak and ladoo. Wishing all Hindu Canadians and Friends a Happy Ganesh Chaturthi! Together, let us celebrate the intelligence, listening, prosperity and wisdom we bring to each other.

National Sister Day, celebrated on the first Sunday in August, honours the unique and lasting bond between sisters. This special relationship is filled with moments that bring laughter, occasional disagreement and unwavering support.

At Grandview Kids, we recognize the important role siblings play and the meaningful impact they have on the lives of our clients. In recognition of National Sisters Day, sisters of clients shared their experiences of being siblings to Grandview clients.

The Wiley Sisters: Anna, Ella and Reggie

“My name is Anna Wiley. I’m a Grandview Kids graduate, and I have two younger sisters, Reggie and Ella. Ella is the middle child, and Reggie is the youngest. They are the coolest sisters I could ask for.

The best thing about having sisters is how supportive they are. They always give their all to what the other cares about, and they take time to show they care. My sisters are so kind and loving, and they are always ready to help. That is what inspires me.”

“Hi, my name is Ella Wiley! I have two sisters, an older sister named Anna and a younger sister named Reggie. My oldest sister, Anna, received speech therapy at Grandview Kids, and I’m also a proud Grandview graduate, as I received physiotherapy and occupational therapy when I was younger.

The best thing about having a sister is always having a built-in best friend. Whether I’m happy or sad, they’re always people I can rely on. They mean the world to me, and life wouldn’t be the same without them. There’s never a dull moment and I wouldn’t have it any other way.

One thing I’ve learned by being a sister to a Grandview Kids client is how important it is to show up for each other with love, patience and understanding. It’s made me a better sister and person. Being part of the Grandview community, both as a sibling and a former client has shown me that there’s a place for everyone. This is my normal, and it’s perfect just the way it is.”

“My name is Reggie Wiley. I have two sisters, and their names are Ella and Anna. The best thing about having sisters is how easy it is to understand, relate to and connect with them. I’ve learned that even with a disability, you can still achieve success in anything you put your mind to.”

Zoey and Zayla

“My name is Zoey Stevens, and I have one sister. The best thing about having a sister is having a built-in lifelong friendship and always having support. One thing that I have learned while being a sister of a Grandview Kids client is how important it is to be patient and understanding with someone with special needs.”

Cianna and Kiara

“Hi, my name is Cianna and I have one sister named Kiara. She is eight years old, and being her big sister is one of the greatest joys of my life. Kiara is funny, creative and full of love. The best thing about having a sister is always having someone by your side to make memories with, whether we’re playing, laughing or just spending time together. We have a very special bond, and I love how we can sometimes understand each other without even needing words.

Being a big sister to Kiara, who is a Grandview Kids client, has taught me so much about love, patience and seeing the world through a more caring lens. I’ve learned that progress comes in all shapes and sizes, and that every small step deserves to be celebrated.

Kiara has shown me how to slow down and appreciate the little things — like her smile when she’s proud of herself, or the way she lights up when we do something fun together. One of the most important things I’ve learned from being her sister is how to be an advocate, not just for her, but for others too.

I’ve become more understanding of how different people communicate and learn, and I’ve realized how important it is to make sure everyone feels included and heard. Kiara has made me more patient, more kind and definitely more courageous. Watching her face challenges with strength and joy has inspired me in ways I can’t even explain. I’m so lucky to have her as my sister, and I’m proud of her every single day. “

Megan and Lauren

“My name is Megan, and I have one sister named Lauren. The best thing about having a sister is that she gets me! Lauren always knows how to make me laugh and brighten up my day, even though we still argue over her stealing all my chocolate. She has taught me patience and shown me how important it is to live life to the fullest. Lauren has faced more than her fair share of challenges throughout the last 17 years, but she is still the happiest kid I know, and I’d be lost without her!”

Grandview Kids Ambassador Program

Grandview Kids is privileged to boast a wide network of clients and their families (known as “Ambassadors”) who participate in our Ambassador Program each year to tell their stories and support Grandview Kids in media opportunities, fundraising initiatives and at events.

Are you a sibling of a Grandview Kids client? We want to give you the opportunity to share your Grandview journey as a sibling with those in the community. Contact our Ambassador Advisor, Abby Valenciano, at Abby.Valenciano@grandviewkids.ca.

July 24 is International Self-Care Day, a day to highlight the importance of self-care in supporting overall health and well-being. Self-care helps restore energy, sharpen focus and foster a positive mindset by ensuring our basic needs are met. It does not need to be elaborate or costly, but it should be meaningful and tailored to each individual. Self-care looks different for everyone. Whether it’s taking time to rest, recharge or indulge, prioritizing your own well-being can help you show up as the best version of yourself.

While self-care looks different for everyone, fresh ideas can help inspire new ways to recharge and care for ourselves. Members of Team Grandview’s Family Engagement and Social Work teams shared some of their favourite self-care tips below!

Step outside for fresh air

Open a window, sit on your porch or go for a short walk. Even a few minutes of fresh air can provide mental clarity, ease stress and help you reset.

Schedule “me time”

Make time for things that bring you joy, even if it’s a solo grocery run, a cozy face mask, your favourite TV show or movie, a manicure or a quiet cup of coffee. Even simple rituals matter.

Move your body

Exercise can take many forms! Whether it’s lifting weights, going for a walk, playing tennis, pickleball or even a game of pick-up dodgeball with colleagues. Regular movement boosts your mood, supports heart health and improves energy levels.

Read a book or magazine!

Reading offers a break from daily stress. Whether it’s fiction, memoir or poetry, immersing yourself in a good book can be restorative.

Sit in nature

Find a peaceful moment outdoors, whether you’re at the lake, a local park or watching the sunset from your window. Nature has a calming effect that helps you pause and reflect.

Connect with others who “get it”

Joining a peer support group, especially one connected to your lived experience can offer encouragement, practical advice and emotional strength. You are not alone. There’s comfort in spending time with those who understand your challenges. Whether you’re sending memes back and forth or sharing a latte in person, those small connections count.

Explore creativity

Don’t wait for “someday.” Try a new hobby like painting, crochet, macramé or cooking a recipe from another culture. Creative outlets can re-energize and inspire.

Journal your thoughts

Writing can be a powerful tool for processing emotions and celebrating growth. Start small, or dive deep into telling your story, your lived experience matters.

Surround yourself with people who lift you up

Supportive friends and loved ones offer comfort, laughter and the kind of company that recharges your spirit, even if it’s just through a meme exchange or quick chat.

Snuggle with a furry friend

Pets offer comfort and help ground us in the moment. Time spent with animals can be a calming and joyful part of your routine.

Practice mindful breathing

Breathing exercises like box breathing or TIPP (temperature, intense exercise, paired muscle relaxation and paced breathing) can reduce anxiety and bring focus.