Family

At the same meeting with geneticists where Benji’s diagnosis was revealed and we were still in shock, geneticists suggested we screen future pregnancies to avoid risk of another affected child. In that moment I was defiant. I interpreted the suggestion as a judgement about the value of my Benji. In misguided anger and wishful thinking, I refused genetic testing for my next pregnancy. I rationalized that this was a very rare disorder. A repeat of this syndrome was highly unlik

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 Over the years, visiting the village became a tradition we all looked forward to. Staying in a room with a full kitchen was especially meaningful for Benji and Giulietta, as it allowed them to continue practicing the meal preparation goals they worked on at home. Cooking in a new space, choosing ingredients, and setting the table became a natural part of our trips, giving the kids opportunities to practice skills, build independen

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 (Sisi) Kleiner-Fisman is an important part of Benji and Giulietta’s lives. She’s not only their sister but also a consistent support and teammate in many of the things they do. Sisi takes part in their learning, helps them during different activities, and contributes to their growth in a practical, hands-on way. Her commitment to inclusion shows in her actions, and she often encourages the people around her to think more inclusively

Learning Through Covid The COVID-19 pandemic brought unique challenges for Benji and Giulietta’s learning. Much of their programming relies on community-based activities, trips to the mall, social circles, volunteer experiences, and hands-on learning in real-world settings. When everything shut down, these opportunities weren’t available, and we had to rethink how to keep them engaged and making progress toward their goals. We got creative when schools and community programs