Pictured with his classmates, Graham Robertello (front row, third from right) shows the joy of friendship. Photos submitted by Kathryn Dekker, Notre Dame School
Notre Dame students rally around classmate to raise funds
By Eileen Jevis
Staff writer
A lesson in the migration of the Monarch butterfly had a special meaning for the kindergarten students at Notre Dame Elementary School in Utica. The students learned that while a butterfly looks small and fragile, it is a powerful symbol of hope and resilience. Their delicate yet powerful emergence from the cocoon symbolizes inner strength and enduring challenges.
Graham Robertello is one of the students who learned the butterfly lesson. But for Graham, it has special meaning. The 6-year-old has a condition called Epidermolysis Bullosa (EB), often called butterfly skin, a rare genetic condition where skin is extremely fragile and blisters easily from minor friction, like a butterfly’s delicate wings.
Kindergarten student Graham Robertello.
“After our class studied the incredible migration of the Monarch butterfly — a journey covering thousands of miles to find safety — the students drew a beautiful connection to Graham’s own spirit,” said teacher Kathryn Dekker. “They realized that when you look at a butterfly, you don’t focus on its small size or the fragility of its wings. Instead, you are captivated by its remarkable strength.”
Graham’s mother, Amanda, said the rare condition results in Graham’s body not producing collagen (the protein that acts as the body’s “glue,” holding skin and tissues together), causing his skin to be extraordinarily fragile. “For Graham, everyday moments most of us take for granted, like walking, playing, or eating, can cause severe blistering and open wounds,“ she said.
To protect Graham’s body, he undergoes an intricate and meticulous bandaging routine. His arms, legs, feet, stomach, and back are wrapped to help prevent new wounds and protect existing ones. Every other day, Graham endures a full bath followed by a complete bandage change, which is essential for his survival.
Many individuals with EB struggle to eat due to painful sores in the mouth and throat. Graham receives most of his nutrition through a feeding tube, ensuring his body gets the nourishment it needs to heal and grow.
“And yet, Graham is so much more than his diagnosis. He is a 6-year-old who goes to school, laughs with friends, and lights up when he plays with his dinosaurs and cars,” said Amanda. “He faces pain that no child should ever know, but he meets each day with courage and resilience.”
Notre Dame students show off the butterflies they made and sold as a fundraiser to support research for Epidermolysis Bullosa (EB).
Acceptance and inclusiveness are part of the core teachings of a faith-based education. Dekker said that Graham has made a profound impact on his classmates as they learn through their religious instruction that we are all people of God. “As students celebrate each other’s unique strengths, it is clear that Graham possesses extraordinary gifts of resilience, courage, determination, and wit.”
Dekker said that Graham’s presence serves as a gentle but powerful inspiration to those around him. “The small daily struggles his peers might face seem to fade away when they see Graham navigating his day without a single complaint,” she said. “By sharing his spirit so generously, he reminds everyone in the classroom of the special talents God gives us.”
Notre Dame School prioritizes acts of kindness every day. Dekker said that teaching the importance of acts of kindness is just as vital as establishing the daily school rules. To give back, the school hosted an EB Awareness Spirit Week in October. The students raised money for research by making and selling butterflies that were on display throughout the school. “The beautiful wall of wings served as a vibrant visual tribute to our support and commitment to making a difference,” said Dekker.
The Robertello family is deeply grateful for “Graham’s Gang” and for every person who has stood beside them on this journey. “Their love, generosity, and unwavering support lift us on even the hardest days. We are also incredibly thankful for Graham’s school community, which has embraced him from day one with compassion, understanding, and care. They say it takes a village, and we are truly blessed to have them walking this road with us,” said Amanda.
“We want people to know that Graham’s diagnosis does not define him, but his courage and brave spirit does,” added Amanda. “Graham is so much more than EB. He is a son, a grandson, a nephew, a cousin, a friend, and a fighter. He meets each day with strength and joy that inspires everyone around him.”
