Interviews

Arthrogryposis is a lifelong condition characterized by joint contractures, most commonly affecting the arms and legs. It is often marked by stiffness and a limited range of motion. While the exact cause remains unknown, the condition is typically diagnosed in utero or at birth.

For Monjuri and her 11-year-old son Rudra, arthrogryposis is more than a diagnosis – it’s a journey of resilience, advocacy and hope. Their story is one of transformation, powered by determination and the unwavering support of Grandview Kids.

“When my son Rudra was born, his hands were on his ears, his knees were on his chest, and his foot was folded over his belly button. He looked like a flower that forgot to bloom.” – Monjuri, 2018

At her 20-week prenatal scan, Monjuri learned that Rudra had club feet. At birth, they discovered he also had contractures in his knees and elbows. What began as a moment of fear quickly turned into fierce maternal protectiveness. “There’s nothing wrong with him. This is who he is,” Monjuri recalls. She remembers thinking Rudra’s habit of sticking out his tongue was just another endearing trait, not yet knowing it was due to low muscle tone. When medical professionals told Monjuri that Rudra might never sit, crawl or walk, she refused to accept those limitations. Alongside her two daughters, she got down on the floor with Rudra, demonstrating how to crawl and cheering him on every step of the way.

Their turning point came when Rudra was referred to Grandview Kids. For the first time, Monjuri felt heard, not just told what her son could not do, but asked what he could achieve. The focus shifted from limitations to possibilities, and that shift made all the difference. At Grandview Kids, Monjuri learned how to advocate for her son. When a hospital doctor dismissed her request for knee ankle foot orthotises (KAFOs), insisting Rudra wouldn’t walk, Grandview Kids’ physiotherapy team encouraged her to fight for him. With the support of casting and KAFOs, Rudra began walking short distances without the need for mobility aids.

Rudra has since benefitted from a wide range of services at Grandview Kids, including Physiotherapy, Occupational Therapy, Recreational Therapy, Speech-Language Pathology and has attended Grandview School. Monjuri fondly remembers how Andrea B., Grandview Kids’ Family Engagement Program Manager, helped her create an “All About Me” book. The book played a vital role in helping Rudra transition to his home school by educating teachers and classmates about his condition and the accommodations he needs.

Arthrogryposis continues to affect Rudra’s daily life. In his early years, he developed painful skin sores and underwent casting to gradually straighten his limbs – a terrifying process for both mother and son. Their Grandview Kids physiotherapist provided helpful information about Shriners Hospital in Montreal, where they self-referred, and Rudra has since undergone five major surgeries. One procedure involved inserting rings into the bones of his legs, requiring bi-monthly visits for five months to realign them. Complications during his July 2024 surgery allowed surgeons to place growth plates in only one leg. In January 2025, Rudra finally received growth plates for his right ankle, where fused kneecaps had previously prevented the procedure. Each time, Grandview Kids has been there, offering essential post-operative physiotherapy to help Rudra regain strength and mobility in a safe, supportive environment.

Now in his preteen years, Rudra is learning the power of self-advocacy. At school, he knows when to ask for help. Through Recreational Therapy at Grandview Kids, Rudra is reminded that he’s not alone. He finds comfort in knowing there are other kids navigating similar experiences and uses his story to educate and inspire his peers. “Sometimes I can’t reach things that are up on shelves or my KAFOs are locked, and I need to wait for an [Educational Assistant] to help,” he shares. His openness fosters understanding, compassion and lasting friendships. “His exceptionalities don’t stop his friends from loving him any less,” Monjuri says proudly.

Though the constant need for advocacy can be overwhelming, both Monjuri and Rudra find strength in knowing they’re not alone. Grandview Kids continues to provide the resources, therapy and even school support needed to keep them moving forward. “Even when I feel advocacy burnout,” Monjuri admits, “I can’t compromise—because I know other kids may need this help too.”

Raising a child with exceptionalities is undeniably challenging, but for Monjuri, it has been a gift.

“I feel blessed to have gone through this journey with Rudra. He is so amazing, and I wouldn’t have known this part of life and the world without him. He is my strength and my courage. When I’m tired and want to give up, I think—if Rudra can do it, I can do it twice over.”

The Complex Care Program celebrates its fourth anniversary of providing care to more than 75 children and youth with complex medical needs living in the Durham Region since its launch in May 2021. This clinic is specifically tailored for children and youth with significant health complexities that often require frequent hospitalizations, involve multiple healthcare specialists and need extensive medical care. Many children and youth who access this program depend on technological support for essential daily functions like mobility, feeding and breathing. In partnership with SickKids Hospital, Lakeridge Health and the Ontario Health at Home Central East, the clinic’s goal is to deliver coordinated care closer to home.

Grandview Kids’ Complex Care (CC) Program serves children of diverse medical complexities, demographics and ages. 18-year-old Rhys is a recent CC graduate. He was born prematurely at 29 weeks gestation age and has several diagnoses, including Cerebral Palsy (CP), chronic lung disease, severe scoliosis and kyphosis, a tracheotomy (trach) and gastrostomy tube (G-Tube), is non-verbal and uses a wheelchair. He is completely dependent on nursing and parental care, requiring round-the-clock total support. Despite his struggles, Rhys is described as a consistently happy and excitable teen who loves to laugh, listen to music and watch action shows. His mom, Becky, shares how participating in the CC Program transformed their journey of fear and isolation into a story of belonging, connection and celebration.

Rhys’ journey began differently from most preemies with a good Apgar score (a system doctors and nurses use to assess newborns after birth). His lungs, however, became easily fatigued, and every attempt to extubate him would result in him coding (a situation where a patient experiences a critical medical emergency, pertaining to cardiac arrest or respiratory failure) because his throat would close, causing further brain damage. He remained in the hospital for the first nine months of his life and was later diagnosed with CP when he was 1.5 years old.

Hopeful of the promises of early intervention, Becky did everything she could for Rhys in those early years, as she did not work to be able to take him to ability camps and optimize the abilities he had. Regrettably, Rhys lost many of his skills over the years due to resuscitation events, which happened every time his trach was removed. He could no longer swallow food, make verbal noises or use sign language. It was a terrifying time for both Becky and Rhys, whose awareness of these incidents increased over time. Thankfully, Rhys was able to undergo airway reconstruction in 2020, so accidental trach removal is less scary since he will not code. He knows he will be able to breathe again because he is on a ventilator.

Over the years, more disciplines at SickKids Hospital needed to be part of Rhys’ medical care. Sometimes the care plan did not always connect, leaving Rhys’ parents confused, especially in the beginning, as no one could provide a solid diagnosis or prognosis. The appointments were inconsistent, not on the same days and required careful full-day planning as Rhys’ family would always need a second trained caregiver to assist with transfers and travel from Bowmanville to downtown Toronto. These frequent hospital visits were also a financial burden as expenses accumulated through parking, gas and purchasing food.

Joining the Grandview Kids’ CC Program three years ago, “Changed his life and made an enormous impact,” Becky says gratefully. Care coordination became easy as clinic days involved his whole team working together to ensure everything was understandable and organized. They became a trusted voice that built rapport over the years as they “got to know your child and history, not only on the computer screen but truly grew up with him.”

Attending clinics was better for Rhys and his caregivers since they only needed to travel 15-20 minutes from home. Rhys also developed white-coat syndrome because of the trauma brought by frequent and painful hospital visits. Grandview Kids, on the other hand, a facility where Rhys received therapy and attended school, was a familiar place full of positive memories. CC clinic days brought peace of mind and happier trips, which led to less stress, enabling Becky to be a more present parent and caregiver.

Becky acknowledges the real threat of being on the precipice of caregiver burnout. “You must become that advocate early on, but you don’t know enough. You need to do your research, but when you go on the Internet, you find mixed information and navigating through everything is difficult,” Becky shares. She attributes a large part of Rhys’ success to the connection to the CC team. Their assistance in working through complicated choices to make informed decisions made their lives easier. Continuity of care was a top priority throughout the journey, even leading to and after graduation. Becky felt she could reach out to the team, knowing peer-to-peer support was present, and that an answer to a question or referral would be made if necessary. The team was “available, resourceful, friendly and truthful” over the years, making the transition from paediatric healthcare to adult healthcare less daunting.

Want to learn more about the Complex Care Program?

Click here to view the dedicated program page.

Vision Health Month is a time to focus on eye health and vision care, encouraging protective measures to protect and maintain healthy vision. Grandview Kids parent, Jessica, shares her family’s journey with their 3-year-old son Malcolm’s vision loss due to Septo-optic dysplasia (SOD). Though there is currently no known way to prevent SOD, early detection and treatment through therapy and support can help manage the symptoms.

Jessica and Mac have three sons, Keith, Theodore and Malcolm. When Jessica was pregnant with Malcolm, she had planned to have a home birth, but because he arrived well past his due date, they had to change their birth plan and have him at a hospital. This hiccup turned out to be a blessing in disguise. There were complications shortly after his birth as Malcolm’s body went into an adrenal crisis, his body temperature dropped, he was not feeding and his blood sugar was extremely low. They were admitted to the hospital’s neonatal intensive care unit (NICU) for a few weeks and connected with SickKids Hospital to be seen by the endocrine and ophthalmology departments. Malcolm was diagnosed with SOD (also known as de Morsier syndrome). This rare congenital malformation is characterized by the underdevelopment of the optic nerve while in utero, leading to blindness, adrenal insufficiency, diabetes insipidus and hypothyroidism. Malcolm also has secondary diagnoses of infantile spasms, hemophilia A and Chiari Malformation.

“We were in denial for a long time with regards to his vision loss. Searching for answers or interventions that would give us some hope that he could see something,” Jessica recalls. “We feared what blindness meant for his already so complex life. Vision is a huge part of our enjoyment, and we placed that same expectation on Malcolm’s life.”

To keep up with the growing list of Malcolm’s medical complexities, his care team connected his parents to Grandview Kids’ Complex Care Program and began receiving therapies. “You don’t want to be part of the Complex Care Program,” Jessica admits, “But it has been lifesaving.” She credits the Complex Care Program for the smooth management and communication of Malcolm’s appointments, medical professionals and connections. The Complex Care team provided consistency, relieving the overwhelm brought on by what felt like endless new diagnoses and care teams. Now, through Grandview Kids, they interact with the same people who know everything about Malcolm. Rather than addressing issues in isolation, they approach Malcolm’s care holistically and family-centred.

Malcolm relies on his parents, siblings and medical professionals to guide him in his life. He will be four years old this year, and his parents are realizing now that he is not transitioning to a more independent life like most toddlers at his age. He is still very dependent on his parents and the people around him, although he tries to show independence in his decisions and likes and dislikes. Malcolm has a unique personality for a child who, on paper, has many things that he must fight against and work hard for. He communicates his wants and needs through facial expressions, cries, laughs or loud noises so people will know he needs attention. He is beginning to say a few words, recognizing how to call upon different family members when he wants them. Malcolm is learning to adapt to his environment, demonstrating excitement, interest or pleasure through rocking back and forth and showing disinterest by pushing away objects with his hands or baring his teeth.

As Jessica and Mac prepare for Malcolm’s transition to school, they are excited to know that he will attend Grandview School for Junior Kindergarten with a team who know and love him. Although it does not take away from the stress of a new season, they know he will receive the services, support and opportunities to thrive in and enjoy school.

Malcolm has taught his family invaluable life lessons. They have learned the importance of remaining present, enjoying their family now and not dwelling on the stress of milestones and what Malcolm’s future will look like. Jessica acknowledges that “[They] are so different as a family because of Malcolm.” Her sons’ report cards “scream empathy” as they demonstrate character development made possible only through lived experience. “They are always trying to understand and help others out and be their support systems. This is because of Malcolm.”

“Malcolm was born blind and doesn’t know a life with sight. His life is still so enriched with the sounds of his favourite songs, his dad signing bedtime prayers, the heat from the sun on his face, the wind blowing in his hair and the excited voices of his brothers. He has taught us to appreciate every little thing around us, not just the obvious visual things.”

When 25-year-old Janae is not studying, she professes her love of singing, going for walks and spending time with friends and family. She graduated from Toronto Metropolitan University, receiving a Bachelor of Social Work (BSW) degree with distinction, and is currently pursuing her Master of Social Work (MSW) with a focus on children and families at the University of Toronto. Janae’s studious disposition stems from her mom, Catherine’s, unwavering validation and her desire to support children and youth with physical, communication and developmental needs and their families. Her lived experience, although riddled with barriers paired with social challenges due to her exceptionalities, has compelled her to become an advocate for others.

Janae was born several weeks early and had a low birth weight but was otherwise deemed healthy enough to go home. However, in the two weeks that she was home, Catherine, a paediatric Registered Nurse at SickKids Hospital, noticed that Janae was not breathing or sucking appropriately. She brought her to a local hospital twice, only to be dismissed as suffering from postpartum depression. Intuition led her to visit SickKids Hospital, where Janae was admitted and diagnosed with congenital heart disease (CHD). A procedure called a “cardiac catheterization” revealed several heart defects and the need for heart surgery. However, post-procedure, Janae suffered a massive stroke. The initial prognosis was poor, prompting her physician to plainly state that Janae’s condition was “incompatible with life.” This life-altering experience was devastating for Catherine, who thoroughly understood the severity of her daughter’s condition with her medical background, but as a mom, felt it very hard to absorb.

Janae’s first six months of life were spent at SickKids Hospital. She had several heart repairs and required a temporary feeding tube and a pacemaker. Once stable enough to be home and out of their program, she received home care due to her medically fragile state. Janae received a secondary diagnosis of Cerebral Palsy (CP) as the stroke severely affected the function of her left side, along with her speech and sight. Eventually, her care was transitioned to Grandview Kids, where she would receive many years of Occupational Therapy (OT), Physiotherapy (PT), Speech-Language Pathology (SLP) and care within the Botox ® Clinic.

With lots of hard work and determination from Janae and her family, Janae learned how to crawl, walk and talk at her own pace. Grandview Kids’ OT supported her by giving her tools to help with school. The stroke caused her left hand to be spastic and at one point they curved inwards and looked fisted. She used grips for pencils and equipment to keep her papers in place for writing, as she did not have the stability to hold them with her left hand. Janae described feelings in her left leg akin to “sleeping” or numbness. Her PT worked on improving Janae’s strength and mobility. In early childhood, she had splints in both hands and legs. She also received Botox ® injections for her left hand and leg, which she continues to do presently, for their effectiveness in reducing spasticity.

Every developmental stage brings on new challenges, but the biggest hurdle that Janae continues to face is the social aspect of life with exceptionalities. She required special support in school, but kids would question and tease her. “This made me feel very out of place due to the accommodations, but I was just trying to get to the same place everyone else was already at,” Janae admits. High school was harder and meaner when it came to her peers and teachers, who sometimes dismissed her accommodations as trying to get out of certain classes. She connected with another Grandview Kids youth and banded together against the negative social interactions they faced at school. She began to advocate for herself more, vocalizing her needs and requesting support letters from her Grandview Kids PT and Botox ® Clinic physician.

Catherine ensured that Janae participated in as many Grandview Kids programs as possible to enhance her independence. She attended programs that taught life skills like cooking, dressing and caring for herself, as well as those that provided information on maturing, puberty and body image.

“Grandview Kids tailored programs to where Janae was based on her capabilities, which is amazing to think that this process began over 20 years ago,” Catherine recalls fondly. “Other kids and youth in the classes had varying disabilities, so she didn’t feel singled out. I took every opportunity for Janae to see not only the negative piece of school but also encouraged her to see that other people were also dealing with challenges in life.”

Janae confesses that she sometimes still has doubts about her potential, but her mom is and always will be her biggest advocate. “My mom is always saying to do my best and that I’m able to achieve anything. It’s easy to self-doubt and focus on your disability when everyone sees the disability and not who I am. It has been a real struggle to be okay, but I’ve learned that that does not define me as a person,” she openly shares. Her mom has taught her to stop “putting herself in the box” and that she can “overcome the odds.” Janae acknowledges the need for a strong network and support system, as it influenced how she viewed herself as a black woman with a disability navigating life. Catherine’s constant affirmations prompt her to encourage others in their journeys and teach them about the importance of self-advocacy.

Justine’s Story

Written by Ambassador Advisor and Grandview Kids parent, Abby V.

Justine is a dedicated, second-year honour roll student at Durham College studying social service work. If she is not doing schoolwork, which is seldom the case, she is either honing her craft as a talented artist in digital and traditional art or doing some form of creative work. Her drive goes beyond her personal goals as she also excels in advocating for people with mobility issues and wheelchair users.

Justine was born prematurely and began her journey with Grandview Kids when she was only six months old. Through a multiteam assessment, it was determined that she would likely have some form of disability. Once the signs and symptoms presented themselves through missed milestones, she was diagnosed with spastic quadriplegia cerebral palsy (CP). Over the years as a Grandview Kids client, she went on to attend Grandview School and receive Medical Services and therapies, including Physiotherapy, Occupational Therapy and Therapeutic Recreation. At a young age, she would also become a Grandview Kids Ambassador, campaigning for the construction of The Jerry Coughlan Building (Grandview Kids’ new Ajax-based headquarters), marking the start of her advocacy work.

“Without [Grandview Kids’] services, I would be in a vastly different spot right now,” Justine thoughtfully assesses when recounting her years at Grandview Kids. “Part of the interpersonal work with Grandview, besides the physical aspects, was self-advocacy.” As she aged, more responsibility was placed on her to be able to take over her care and have her mom less involved. Justine uses a power wheelchair but manages to efficiently direct her care, oversee her pain management and plan her use of public transit. She distinctly remembers a time when sitting up for long durations was a challenge as she would slowly lean over and be unable to hold a conversation for long. Through hours of painstaking therapy, stretches, enduring Botox injections and adapting to equipment changes, she has learned the importance of self-reliance, independence and self-advocacy, which she now carries over into her work.

A significant barrier that Justine continues to face is explaining what she endures to her peers, teachers, support staff and even those closest to her. Constantly educating people and advocating for herself as she explains her needs and paints her perspective is emotionally taxing. Another hurdle is the lack of social, physical and structural accessibility in the community. “Grandview Kids is built to be accessible, but most places, especially older buildings, are not,” Justine says. She is always reevaluating the accessibility of spaces she is in for herself and others.

Justine’s exceptionality, talent and inspiration continue to reach many people. She won the 2024 current client “Spirit of Grandview Kids” award. Nominated by her rehabilitation team, they testify how they have learned so much from her. “She can tell her therapy team how various tasks impact her and how they make her feel. She participates in her clinic appointments, and she lets the team know how our services affect her day: both good and bad!” Justine has years of practice and is very well-versed in her care, and “will use her voice to speak up for the clients that cannot tell us verbally how Botox injections feel or that AFO’s [ankle foot orthotics] can make your feet cold,” her therapists attest. “Justine is Grandview Kids’ vision, mission and values personified. She is living life to her fullest potential and ‘crushing it!’”

Justine reflects on her own experiences and asks herself, “How can I be the solution for other kids?” She recognizes that kids and youth with physical, communication and developmental needs face unique challenges that can leave them having negative, although valid, emotions of hurt, worry and anger. “Keep your head up because it’s tough, and there are days you want to give in. As long as you feel best in your skin and happy with where you’re at, that’s all that matters. Your quality of life and your joy are all that matters. Everything else is a second thought.”

Interview with Scott Bremner, author of Durability: Braving the non-disabled world

We recently had an interview with Scott Bremner, the author of Durability: Braving the non-disabled world. Read what he had to say about his book, the writing process and his inspirations.

Scott Bremner, sitting in a chair posing for a photo wearing plaid shirt. — Scott Bremner

What inspired you to write this book about your life?

I believe it was the anniversary of the Ontarians with Disabilities Act, the first of two legislative bills to increase accessibility in this province. All these people who had been involved in advocating for the disabled community were in one room. Former Lieutenant Governor of Ontario, the late David Onley, and David Lepofsky, lawyer and advocate, were there, along with current and former politicians and members of the disabled community.

While there, I met Marie Bountrogianni, who wrote the follow-up legislation: the Accessibility for Ontarians with Disabilities Act, passed in 2005. That was the final push I needed to write the book hearing the unique perspective of this woman—the one who put pen to paper on significant legislation. The idea of writing a book had been in my head for years, but seeing those people all gathered showed me that people cared and still cared. An entire community had been working on getting the idea of accessibility out there in the public eye for years. I knew from that day the book would happen in some way. That was inspiring for me. I saw a path forward, a way to do this.

What was one of the most surprising things that you learned when creating your book?

It wasn’t the book or the writing itself, but everything after it was written. Answering questions like, “how are you getting the book out there?” and figuring out whether to publish the book traditionally versus self-publishing or thinking about how to design the cover. It was all very much trial and error. Durability was written for a specific purpose, so I want as many people as possible to read it.

Scott, author of Durability, holding up his book, Durability. — Scott holding his book, Durability.

What does the title mean to you? Why did you choose it?

It was the name of the show I hosted on Rogers TV for five years. I like it because it’s always had two meanings: Durham ability (I live in Durham Region) and Durability, which means strength. People with disabilities go through a lot. We’ve been put through a lot and have had to handle a lot, personally and professionally.

Durability might as well be the motto for the disabled community. But that doesn’t mean those challenges don’t affect us because we face barriers constantly. We get through the day and meet challenges at any age. That doesn’t mean we don’t need help. That we don’t need more people to get involved in the accessibility movement. We do. To progress, to gain traction, readers of all kinds benefit from knowing the adversities we face and have faced in the past.

Can you tell me a little bit about the book? How will individuals (with or without disabilities) benefit or learn from your book? What do you hope readers will gain from reading your book?

The book was written in three sections: the first part is a memoir, the second is an advice guide for people with disabilities and parents with children with disabilities, and the third part is a political history of disability and accessibility legislation throughout the province, the country and North America. As a journalist, who went to school and had a career in journalism, it was important for me to talk with experts about topics important to persons with disabilities.

There are things I didn’t know myself, but I learned from researching while writing my book. That is part of the joy of writing and journalism for me, finding out something you didn’t know and getting clarity for people, especially those who were there, and that was an interesting experience.

I’ve had a lot of great conversations with politicians and stakeholders. I asked them not to hold back. It was the same talking with my friends and family about how they saw things. These people were real with me. Even though I’ve made mistakes, looking back at the time, I thought I was making the right decision because when you’re 10, you don’t think about how those decisions will affect your 30s or beyond. I’ve grown as a person, and I matured while writing Durability. You learn just as much from failing as you do from succeeding. If I can make things easier for people by writing a book where you can understand other people’s points of view, it benefits the readers.

Scott Bremner received the Queen’s Platinum Jubilee Medal in 2022.

Scott’s book is available on Amazon and at Blue Heron Books in Uxbridge.

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