In August of 2024, Hannah and Garrett Novinski’s world shattered. Their daughter Lennon, a year and a half, had been having seizures since June, and after two extensive hospital stays and multiple rounds of testing, they received genetic results that Lennon was positive for CLN1 - Infantile Batten Disease.

Infantile Batten Disease is a terminal genetic disease that progressively destroys brain cells, leading to a decline in motor skills, speech, vision, swallowing and cognitive abilities. There is currently no cure for this disease, and eventually it will lead to complete loss of functions. Life expectancy for children with Infantile Batten Disease is early childhood.

After Lennon’s diagnosis, the family of four was tested for Batten Disease. Through this testing, Garrett and Hannah discovered they are both carriers. Their next discovery sent their world into chaos—their youngest daughter Elliott tested positive for CLN1. At the time of her diagnosis, Elliott was just 4 months old.

Garrett is a elementary PE teacher for the Amphitheater School District, including adapted PE to provide specialized support for students with special needs. Hannah taught in the Vail School District for ten years. Once the girls were both diagnosed, she stepped away from teaching to be a full-time mom and caretaker.

Update as of February 2026: Lennon, now three years old, no longer walks, crawls or sits up. She uses a wheelchair and other adaptive equipment to access the world around her. She is fed completely through a gastrostomy tube and is nonverbal. She has many seizures a day, but through it all she smiles and laughs. She is a special girl—lighting up any room she is in. Elliott is now a year and a half old, and in the midst of disease progression. She no longer talks, walks, stands or crawls. She is fed primarily through her gastrostomy tube, and also suffers from daily seizures. She requires more comfort as she struggles with irritability and frustration from the sudden loss of functions. The things she once loved to do (play, move, go) she simply can’t do anymore and she can’t process why.

Since Lennon and Elliott require around the clock, highly specialized care, the Novinski family relies on attendant care support from the Arizona Department of Economic Security’s Division of Developmental Disabilities. With state-funded support programs currently in flux, the Novinski’s face the terrifying possibility of losing the specialized in-home care that keeps their daughters safe. Eliminating their mortgage is the only way to guarantee they can stay in this home regardless of what happens with state funding.

Garrett and Hannah have spent their entire careers pouring themselves into the children of Tucson and Vail. Now, as they face the unimaginable task of saying goodbye to their own, our goal now is to pay off the family’s mortgage. By securing their home, we ensure that Lennon and Elliott’s final years are spent in the only sanctuary they know, and that Hannah and Garrett never have to choose between a paycheck and a final goodbye. Your donation gives the gift of time.

Please share this update with your community to help us reach our goal for Hannah, Garrett, Lennon, and Elliott. Thank you for your generosity.

"All funds are managed directly by Hannah and Garrett to secure their home and cover the girls' ongoing specialized care needs."