Galit was born in Buffalo, New York and moved across multiple countries with her parents and younger brother, before her family eventually settled in Edmonton, Alberta . She worked hard at school and driven by discipline and ambition, she completed a Bachelor of Science in Chemistry and Physics, at the University of Alberta, attended McGill Medical School, in Montreal PQ, and completed a neurology residency at Harvard University in Boston, MA. She completed her subspecialty raining in Movement Disorders at the University of Toronto. Along the way she got married to a fellow physician and she began her academic medical career at the University of Pennsylvania, in Philadelphia, PA.
Enthusiastic to start a family postponed by years of training, she never imagining how profoundly motherhood would reshape her understanding of success, resilience, and compassion.
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Parenthood turned out to require a completely different set of skills than what she had spent years training for, including deep vulnerability and uncertainty.
The Teacher I never Expected: Meeting Benji
Our son, Benjamin (“Benji”) was born in 2004, a year and a half after arriving in Philadelphia. The pregnancy was complex and high risk but at the time, there was no definitive reason to be concerned that he would be anything other than healthy like everyone else. However, when he was born, premature, he was immediately whisked to the neonatal intensive care unit (NICU) with numerous medical problems requiring a prolonged NICU stay.
Within 4 weeks, the diagnosis was confirmed: 22q13 deletion syndrome (now known as Phelan McDermid syndrome); a disorder so rare that only a few dozen cases had been reported worldwide at the time. The geneticist's words were prophetic: "Take him home, love him, he will write his own story."
The first year was consisted of complex medical challenges, feeding struggles, sleepless nights, and deep anxiety. Still he was such a beautiful little person whose bright eyes and smile that lit up a room. But the developmental milestones that are supposed to come, never came. Benji couldn't hold his head up in a stroller at a year old. He couldn't sit without support. He couldn't roll over. To stand he required propping up against the wall. And there are no words. Every day we hoped we would hear the words "Mama" or "Dada" but the words never came.
Despite the lack of milestone attainment, and professionals that painted a picture of severe limitations and minimal hope, we saw a child with engaging eyes, who seemed to clearly understand everything around him. He endeared himself to everyone he met.
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The Lightning Strikes Twice: Meeting Giulietta
Shortly following Benji's birth, before we had the full scope of understanding the consequences of 22q13 and how the condition would affect Benji, geneticists suggested we screen future pregnancies to avoid risk of another affected child. In that moment the suggestion of having another child who would be "normal" as a judgement about the value of Benji. In misguided anger and wishful thinking, I refused genetic testing for my next pregnancy. We rationalized that Benji would be ok Benji and just needed time to catch up if we did enough early intervention. 22q13 was a very rare disorder. Another affected child was highly unlikely. In retrospect its hard to fully comprehend the decision-making at the time, but processing grief is lengthy, complicated, and not linear, and denial was the state we were in at the time.
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Giulietta was born in 2007, by which time we had moved back to Toronto. There were similar warning signs in infancy with low muscle tone. By six months of age, our beautiful baby girl had significant developmental delays. We now had two very young children with the same rare genetic disorder the full scope of which no one knew. It was a road uncharted.
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Profound Isolation
As time passed and the kids grew, feelings of isolation became prevalent. It was difficult to attend social gatherings and Benji and Giulietta were different, and could not interact or play with other kids independently. They could not verbally communicate like their peers, or even sit up unassisted. All interactions had to be facilitated which was exhausting and disheartening. Public outings became exercises in emotional endurance, people stared with pity, inappropriately asked "what was wrong” with the children, or looked away in embarrassment. Even well-meaning parents would shush their curious children and hurry away.
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Interactions with the outside world left us feeling vulnerable and "other." It was difficult to feel positive when the children were perceived as a liability and needing charity. The challenges of caregiving both physically and emotionally were overwhelming. Benji and Giulietta had disrupted sleep, such that as parents we were exhausted. Working full time as physicians with clinical, teaching and research demands felt like an impossible burden and constant tension between professional and parenting responsibilities, and the ever-increasing costs of therapies and treatments.
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The Reality
As a physician, I was trained to practice with compassion and to appreciate the impact of disability and illness on an individual. However, I soon came to realize, that my professional vantage point did not prepare me for the lived experience of parenting two medically complex children with a developmental disability. The fear and uncertainty were constant and all-consuming. I was consumed by the pursuit of my children living a meaningful life, despite all their challenges. Doing so would require substantial financial resources for so many medical, educational, and developmental needs. was Even if we could find a path forward in the immediate future, every parent of children with disabilities or medical frailties, worries about who will care for their children once parents pass. Contemplating a successful future was overwhelming and seemingly out of reach.
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The Long Road of Failures
The professional consensus was that Benji and Giulietta would never communicate meaningfully, hold a job, or live independently. It seemed that the best we could aspire to was that Benji and Giulietta could be “managed”. This struck me as inconsistent with my values and wishes for my children. Benji and Giulietta deserved to have their hopes and dreams realized, and to live a meaningful and purposeful life just like anyone else.
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There was a big gap between my theoretical aspirations and the reality of our every day. We juggled medical frailties and intensive caregiving, with deep heartbreak. Despite all efforts with conventional "therapies" we had the sinking realization that the skill gap between neurotypical children and Benji and Giulietta was getting wider. There was substantial financial burden with increasing debt to finance turning over every stone, looking for some miraculous treatment that could help.
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This pattern of discovering a new therapy or therapist and intensely trying to implement complex recommendations that stressed our family unit and financially nearly broke us continued for years. There were some perceived small gains once in while but mostly expensive failures and dead ends. We tried numerous teams, sought experts near and far, and exhausted every possible therapy and program. Any success was isolated, not part of a unified approach. Medical setbacks constantly interrupted progress, even a simple cold could trigger seizures and loss of hard-won skills, which had a domino effect of frustration and discouragement and needing to start again from the beginning.
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The current model of Benji’s and Giulietta’s meaningful life, didn't emerge from a grand vision pursued linearly with clarity and direction, it evolved through nearly two decades of trial and error, deep heartbreak and cost, but slowly building on what worked and discarding what didn't. Working towards a solution was an infinite amount of blood, sweat, and tears.
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The Breakthrough: Seeing My Kids in a New Light
The first breakthrough came in 2011 when we met Laura Hunter, a woman with decades of experience working with youth with disabilities. In one pivotal conversation, Laura shattered the dogma regarding my children's (lack of) potential. She taught us that Benji and Giulietta were capable, and that having no expectations of them, believing they were incapable, was a path to failure.
Laura recognized that every individual is teachable under the right circumstances and within a framework of patience, empowerment, and tangible goals such that the individual starts to believe in themselves. The first step wasn't finding the "right" program, it was psychological. We had to believe in them first, then teach them in ways that set them up for success.
This wasn't just a philosophy. Laura proved it.
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From Doubt to Discovery
Benji and Giulietta started in Laura's summer camps, then progressed to adapted biking and gym programs. Their favorite place of all was her farm, where, amongst the animals they were at ease, and made strong connections. They were outdoors, in nature, working hard. For the first time, there were real expectations of them. They had barn chores. Responsibilities. Purpose. The path forward began to crystallize. They were happy. They were learning skills. This was proof of concept that under the right environment and with the right leadership, Benji and Giulietta could lead “a meaningful life”.
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Working alongside Jesse Seguin, Laura's son, our team began to form. For years, the children rode horses in Laura's therapeutic riding program. The farm became their sanctuary, a place where they fed animals, connected with nature, went on hikes with the dogs, and stood as equals.
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Watching my children on the farm, I saw my children belonging in the world. I realized this could only happen when the community that they are in, accepts them for who they are.
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A New Vision Takes Shape
This revelation opened doors that I previously hadn’t imagined. With this new lens of possibilities, we found a Montessori school that accepted Benji and Giulietta with open arms. Regina Lulka, Head of School, and her staff, walked the walk of inclusion. At Montessori we could trial our life-skills focused learning program uniquely tailored to Benji and Giulietta’s interests and abilities, with valuable peer-to-peer interactions, in a flexible and inclusive setting. The magic wasn't just in our customized curriculum, it was in how the other children responded.
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Benji and Giulietta were accompanied by 1:1 support from our Team, that facilitated classmates taking interest in, and befriending Benji and Giulietta. Their classmates genuinely wanted to learn how to communicate with and later on, teach Benji and Giulietta themselves. Over time, the became natural teachers and mentors. They played adapted sports together, participated in cultural traditions, and went on class field trips. Every small success was cheered on by the students and staff. Most of all, they genuinely liked Benji and Giulietta.
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Our Team became masters at bridging communication gaps, and their modelling was so effective that the other students naturally adopted the same inclusive, kind approach. The students took initiative to design their own teaching plans for Benji and Giulietta, competing for turns to teach and play with them. Through this process, these young people learned valuable lessons about dignity, respect, and finding ways to connect across differences, even without verbal speech.
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For the first time, Benji and Giulietta weren't just accommodated, they were included. They were celebrated for who they were, learning alongside everyone else, having friends, and loving school.​ Again, this was another proof of concept that under the right circumstances and leadership, Benji and Giulietta could live a meaningful life and be happy.
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The transformation impacted everyone involved. Their classmates grew up seeing Benji and Giulietta as part of their peer group. This experience cracked open a door to possibilities that we previously couldn’t envision; maybe life in the broader community was possible after all with the right supports and under favourable circumstances like those that existed at Montessori.
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In 2012, Sisi was born. She brought joy to our family. All the bustle that goes along with caring for a busy toddler brought chaos but joy. Observing her reach milestones was especially gratifying. The relationship between all three children was precious to witness, with Benji showing remarkable gentleness toward his baby sister and Giulietta finding ways to connect, laugh and show warmth. Sisi represented hope and normalcy.
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Building the Dream Team
As our team grew and evolved over the years, every member shared one defining trait, the ability to see potential and the fortitude to persist. That foundation would become essential when, in 2015, our world collapsed under the weight of overlapping crises: my three-year-old daughter Sisi was diagnosed with a rare cancer just a month after my marriage ended, leaving me to navigate her aggressive treatments while caring for Benji and Giulietta and maintaining my career as a single parent.
The year was marked by relentless hardship, crystallized in a surreal moment when Benji was admitted to the ICU with seizures and placed in the very bed Sisi had vacated only 24 hours earlier after a prolonged stay due to her life-threatening tumour . Yet the inclusive, strength-based philosophy instilled by Laura and reinforced by our growing community proved life-saving, reminding us that Benji and Giulietta belonged, were capable, and deserved every opportunity to thrive.
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Beyond School: A Life of Continuous Learning
What began as a journey through darkness, marked by sadness, uncertainty, and hopelessness, has evolved into something I never could have imagined: A life of possibility, enthusiasm, and deep connection within our community. My children have found their place in the world, and in doing so, they have helped create a more inclusive world for everyone.
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What “Journey to Belonging” Looks Like
What we've created represents the true manifestation of Ontario's Ministry of Children, Community and Social Services' (MCCSS) "Journey to Belonging" framework, moving from managing people with disabilities to supporting them to live self-directed lives in which-ever setting suits them best.
Currently aspirational except in a few exceptional cases as the program has not yet been rolled out in Ontario, “Journey to Belonging” envisions people with developmental disabilities as valued society members with real choices. Our model proves this is not only possible but sustainable, replicable, and cost-efficient.
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The Governance Innovation
The key to sustainability was establishing a Microboard, an incorporated non-profit network of volunteers who know my children personally and make decisions with them at the center. Unlike traditional service models, this provides person-centered support designed around their individual needs.
The Microboard manages quality assurance and financial accountability to MCCSS while ensuring succession planning. As I age, employee and government funding contracts with the Microboard, not me personally, ensure continuity of care and vision. Microboards Ontario (MBO) is a non-profit organization that provides information for families interested in pursuing a Microboard framework.
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The Transformation
Benji, now 20, greets colleagues and friends with his signature smile and "Hello" card. Giulietta, at 18, pursues literacy and other goals that matter to her. They live in their own home with their family supported by people who care about them. Benji and Giulietta are living lives that honor their individual interests and goals on their own terms. Most importantly, they are genuinely, consistently happy.
Their value has never been defined by what they achieve, but by who they are as unique individuals. However, the skills they gained translated into increased ability to interact with others and increased autonomy to do the things that are important to them, their ultimate goal. Their story demonstrates that with the right infrastructure, even with significant disabilities, a person can pursue their own version of belonging and fulfillment, and lead a life of dignity and purpose according to their own wishes and aspirations.
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A Roadmap for Others
We share our family’s story in hopes of offering both inspiration and a practical roadmap, helping other families realize that a life built on autonomy, choice, and belonging is possible for every person, regardless of disability. Although this model may not fit every family or individual, its core principle, person-centered planning, meaningful skill-building, and community integration, can be adapted to support anyone’s goals. We don’t define what a meaningful life should look like. Every life has inherent worth, and every family does the best it can.
For parents who feel overwhelmed or alone, especially when navigating medical or developmental challenges, we hope our experience shows that even seemingly impossible barriers can be overcome in pursuit of a child’s unique version of a fulfilling life.
To learn more about Benji and Giulietta’s work, daily routines, and the support infrastructure that make their independence possible, we invite you to explore the rest of the website. Benji and Giulietta's story is still unfolding, and their future is bright.
