Galit was born in Buffalo, New York and grew up across multiple countries before her family settled in Edmonton, Alberta. She completed a Bachelor of Science in Chemistry and Physics at the University of Alberta, attended McGill Medical School in Montreal, and completed her neurology residency at Harvard University. She then pursued subspecialty training in Movement Disorders at the University of Toronto before beginning her academic medical career at the University of Pennsylvania in Philadelphia
Meeting Benji
Benjamin ("Benji") was born prematurely in 2004 in Philadelphia and spent his first six weeks in the neonatal intensive care unit. Within a month, he received a diagnosis of 22q13 deletion syndrome, now known as Phelan McDermid syndrome, a condition so rare that only a few dozen cases had been reported worldwide at the time.
​
The early years brought significant medical and developmental challenges. Developmental milestones were delayed, and professionals offered a guarded prognosis. Yet from the beginning, Benji was a sweet and engaging child who endeared himself to everyone he met. His geneticist's words proved prophetic: "Take Benji home, love him. He will write his own story."
​
And he has.
Meeting Giulietta
Giulietta was born on March 8, 2007, after our family had moved back to Toronto. By six months, I recognized the same features of low muscle tone I had seen with Benji, and it became clear that Giulietta also had developmental delay and consistent with Phelan McDermid Syndrome. I now had two very young children with the same rare genetic disorder that no one had heard of.
Yet from the beginning, Giulietta was a beautiful and treasured child who brought warmth and spirit into our family. Having walked this path with Benji, I was better equipped to advocate for what she needed, and I was determined that both of my children would have every opportunity to thrive and meet their full potential whatever that was.
The Early Years
As the children grew, they required supported interactions and communicated differently than their peers. Balancing a full time medical career with caregiving responsibilities required significant coordination. Therapies and treatments represented ongoing commitments of time and resources.
A New Perspective
As a physician, I was trained to practice with compassion and to appreciate the impact of disability on individuals and families. However, professional training did not fully prepare me for the lived experience.
Supporting children with complex developmental needs requires substantial resources across medical, educational, and therapeutic domains. Long term planning also becomes essential: ensuring continuity of care and support across the lifespan.
Seeking Solutions
The professional consensus emphasized management over development. This did not align with our goals.
We pursued conventional therapies while managing ongoing medical needs. Over time, we explored numerous treatment options, seeking approaches that would support growth and independence.
This pattern continued for years: exploring new therapies, implementing recommendations, and assessing results. Some approaches produced small gains, but most did not lead to lasting outcomes. We consulted numerous teams and sought specialists, trying available therapies and programs. When progress occurred, it was often isolated rather than part of a unified approach. Medical setbacks regularly interrupted progress, requiring us to rebuild.
​
The current model did not emerge from a single vision. It evolved over nearly two decades of trial and error, building on what worked and discarding what did not.
A Shift in Perspective
In 2011, we met Laura Hunter, a woman with decades of experience working with youth with disabilities. Laura introduced a different perspective: Benji and Giulietta were capable of learning, and low expectations could limit their progress.
​
Laura's approach recognized that every individual is teachable under the right circumstances, within a framework of patience, empowerment, and tangible goals. The first step was not finding the right program; it was adjusting our expectations. We needed to identify teaching methods that set them up for success.
​
Laura demonstrated results.
The Farm Program
Benji and Giulietta began attending summer camps and progressed to adapted biking, gym programs, and a therapeutic farm program. There, they took on barn chores, cared for animals, and participated in outdoor activities.
​
This environment demonstrated that with the right setting and expectations, they could develop skills and participate meaningfully. Their progress depended on a community that accepted them and recognized their potential.
The Montessori Program
A Montessori school that practiced true inclusion became the right fit. A customized life skills focused curriculum was developed by their one to one support team and implemented alongside their peers throughout the day. With that support, they engaged with classmates who learned to communicate with them and became natural mentors. They participated in adapted sports, cultural traditions, and class field trips.
What mattered most was that Benji and Giulietta made real friends. They became part of the peer group, and their classmates adored them. Those friendships gave them a sense of belonging and an intrinsic motivation to pursue their life skills goals.
This was the beginning of a longer journey toward real growth, independence, authentic relationships, and a meaningful place in the community
With support, classmates learned communication strategies and took initiative in teaching and playing with Benji and Giulietta. Through this process, students learned to connect across differences, including through nonverbal communication.
Benji and Giulietta participated in school activities, built practical skills in a setting that motivated them, and formed lasting friendships. This reinforced that with the right environment and leadership, meaningful participation was possible.
In 2012, their sister Sisi was born. From the start, Benji and Giulietta embraced their roles as older siblings, and Sisi grew up with a natural understanding of how to connect with them. The three formed close bonds, and Sisi brought new energy and joy to the household. Together, they developed their own ways of communicating, playing, and looking out for one another.
It Takes a Village
As our team grew over the years, every member shared a defining trait: the ability to see potential and the persistence to continue.
​
That foundation was tested in 2015. My marriage ended, and one month later, my three year old daughter Sisi was diagnosed with a rare cancer. I was now a single parent navigating her treatments while caring for Benji and Giulietta and maintaining my medical career.
​
The challenges compounded. Within a 24 hour period, both Sisi and Benji were admitted to the ICU, Sisi for cancer treatment complications and Benji for seizures. The team stepped up. They took leadership of Benji and Giulietta's care, kept me informed while I was at the hospital, and maintained stability and normalcy at home. They continued to push forward with the children's programs and progress, even in crisis.
​
It takes a village, and they became mine. What started as professional relationships deepened through shared hardship and shared goals. We became a family, bound by commitment to the children and to one another.
The Next Chapter
When formal schooling ended, it was not the end of learning but the beginning of a new phase. We sought opportunities based on what Benji and Giulietta enjoyed: experiential learning integrated into daily life, with continued skill development and community participation.
​
What began as a journey through uncertainty has evolved into a life of possibility and connection. Benji and Giulietta have found their place in the world, and in doing so, have contributed to creating a more inclusive community for others.
"Journey to Belonging" in Practice
Ontario's Ministry of Children, Community and Social Services (MCCSS) released "Journey to Belonging: Choice and Inclusion" as its long term vision for developmental services reform. The framework states: "People with developmental disabilities are supported by their communities, support networks and government to belong and live inclusive lives. People are empowered to make choices and live as independently as possible through supports that are person directed, equitable and sustainable."
​
The model we have built aligns with this vision. Benji and Giulietta live in the community, make choices about their daily lives, and are supported by a team that knows them. Their supports are individualized rather than determined by a program or placement. They participate in employment, recreation, and community activities based on their interests and abilities.
This approach demonstrates that the Journey to Belonging vision is achievable. It is also sustainable, replicable, and cost efficient
Governance and Sustainability:
The Microboard Model
The key to sustainability was establishing a Microboard, an incorporated nonprofit consisting of a network of people who know Benji and Giulietta personally and make decisions with them at the center. Unlike traditional service models where individuals access predetermined programs, a Microboard provides person centered support designed around individual needs, preferences, and goals.
​
The Microboard manages quality assurance and financial accountability to the Ministry of Children, Community and Social Services. It also addresses succession planning. Employment contracts and government funding agreements are held by the Microboard rather than by any individual family member. This structure ensures continuity of care and vision over time.
​
Microboards Ontario (MBO) is a nonprofit organization that provides information and support for families interested in pursuing a Microboard framework.
Benji and Giulietta Today
Benji now 21, works and connects with peers, greeting colleagues and friends with his communication card. Giulietta, at 19, pursues literacy and other goals, and enjoys books and music. They live in their own home with family, supported by people who know them well.
They have meaningful relationships with teammates, coworkers, and friends. They are recognized as members of their community. They have expectations placed on them, they show up, and they take pride in what they do. They go to work, spend time with people they care about, and make choices about their days.
Their story demonstrates that with the right infrastructure, anyone can pursue their own version of belonging and fulfillment.
Why We Share This Story
We share this story to offer a practical example for families navigating similar circumstances. Our goal is to demonstrate that a life built on autonomy, choice, and belonging is achievable.
​
This model may not fit every family or situation. Resources, circumstances, and preferences differ. However, the core principles of person centered planning, skill building, and community integration can be adapted to support a range of goals. Every life has inherent worth, and every family finds its own path.
​
For families who may feel overwhelmed, we hope this demonstrates that progress is possible, even when the path forward is unclear.
​
To learn more about Benji and Giulietta's work, daily routines, and the support infrastructure behind their lives, we invite you to explore the rest of the website
