When asked what St. Gabriel the Archangel Catholic Elementary School thought of Claire Gortnar, they responded, “she is the perfect combination between princess and warrior.”
Claire is a junior kindergarten student at St. Gabriel the Archangel Catholic Elementary School. In the classroom, her favourite subjects include music and movement. She also enjoys being around her friends at school. Outside of the classroom, she rides horses, plays with her bulldog, Boo, and is one of about 15 people in Canada living with CLN2 Batten disease.
Terri and Mark Gortnar, parents of Claire, were over the moon when they welcomed their daughter to the world. Everything appeared normal until Claire turned three and suffered her first of many seizures. After running tests, they discovered Claire has CLN2, a rare form of Battens disease, which is a fatal disease of the nervous system that will eventually affect her ability to walk, talk, eat and will cause dementia. Most children who have the disease don’t live past their teens.
The family received even more heartbreaking news when they discovered that their son, Josef, at the age of 22 months, also has CLN2.
Although heartbreaking, this story is about strength, resilience and friendship.
“My staff approached me with the brilliant idea to host a fundraiser in support of Claire and her family. Within a matter of a week, we launched the fundraiser, including folding more than 1,000 paper cranes for Claire,” said Christine Sandig, principal at St. Gabriel the Archangel CES. “All the items we sold at the fundraiser were all generously donated by our school community. We are so blessed to be part of a community that continually demonstrates compassion and love for one another.”
Students and staff organized a series of fundraisers in support of the Gortnar’s campaign, #CureforClaire. The school organized a tuck shop, live DJ to host a dance-a-thon, sold candy grams, collected pledges and more. Together, they raised a total of $32,547.10 that will go towards the cost of treatment that is not available in Canada, for Claire and her brother.
“We are so overwhelmed with all the support and seeing how everyone has come together for our little girl. It fills our heart with so much love and gives us the strength to find a cure for both our kids. We are incredibly grateful,” said Claire’s mother, Terri.
Claire’s classmates have been a major support system and are always eager to help Claire throughout the day and make her laugh.
“Her classmates adore her. When she enters the kindergarten yard, her friends run to greet her. They include her in every aspect of the day like reading stories to her, building with blocks and dancing with her. It’s heartwarming to see the tremendous love and compassion they have for their dear friend,” said Maria Teresa Colasanti, teacher and Maria Imbrogno, early childhood educator at St. Gabriel the Archangel CES. “Terri tells us that when Claire wakes up in the morning and mom says the word ‘school’, her face lights up with a big smile.”