Family

​ Giulietta was born on March 8, 2007, by which time we had moved back to Toronto. She was a beautiful, sweet baby that brought joy to our family. However, by six months of age, Giulietta had low muscle tone and developmental delay.

Our son, Benjamin (“Benji”) was born and immediately whisked to intensive care with numerous medical problems. Shortly after he was born, the diagnosis came: 22q13 deletion syndrome (now known as Phelan McDermid syndrome); a disorder so rare that only a few dozen cases had been reported worldwide. The geneticist's words were prophetic: "Take him home, love him, he will write his own story." Where It All Began: Our Journey Starts Here The first year was constant medical cri

Giulietta soaking in the music in the village There has always been something special about stepping away from our everyday routines and truly reconnecting as a family. For us, that place has always been Blue Mountain. Over the years, it became more than just a getaway, it became a tradition we all looked forward to. It was where we could relax, explore, and spend meaningful time together. One thing that has always been important for our family is booking a room with a full k

In 2015, following Sisi's cancer diagnosis, she was offered a Make-A-Wish trip. Make-A-Wish Canada is an incredible organization that "creates life-changing wishes for children with critical illnesses. We are on a quest to bring every eligible child's wish to life, because a wish is an integral part of a child's treatment journey. Research shows children who have wishes granted can build the physical and emotional strength they need to fight a critical illness." As the Make-A

Benji had low muscle tone. This affected his ability to hold his head up, sit up independently, crawl, stand, or walk. From Day One: Supporting Benji Through Hypotonia Benji's low muscle tone (hypotonia) was present since birth, and we attempted every form of early intervention to help him meet motor milestones. We worked closely with numerous occupational and physical therapists. In the early days, we tried to encourage "tummy time" to increase his tolerance to being prone a

A Sister Who Makes a Real Difference Siena, known as Sisi, plays a meaningful and steady role in Benji and Giulietta’s lives. She is not only their sister, but also someone who shows up for them in ways that truly matter. Whether it’s during daily routines or special outings, Sisi is actively involved, offering support, encouragement, and companionship. Her approach is natural and genuine, and her commitment to inclusion is something she demonstrates through her actions every

Learning Through Covid The COVID-19 pandemic brought a set of challenges that deeply impacted the way Benji and Giulietta learned and experienced the world around them. Much of their programming had always been rooted in the community, from trips to the mall and social outings to volunteer opportunities and hands-on learning in real-life settings. When everything suddenly shut down, those opportunities disappeared, and it became clear that a new approach was needed to keep th