Support Gracelyn's Journey with Sandhoff Disease

My name is Sara and I am auntie to sweet Gracie. My sister Rachel and her husband Josh are facing something no parent should have to face as they navigate the medical needs and expenses associated with Gracelyn's devastating diagnosis.

Our family is heartbroken to share that in early January 2025 our sweet Gracelyn, at 8 months old, was diagnosed with a one in one million rare and fatal genetic condition, called Sandhoff Disease. It is a progressive neurodegenerative condition that will slowly take away her ability to do things like sit up, smile, move, and eat. It is a relentless, devastating disease that affects the brain and spinal cord on a cellular level. Sandhoff disease is clinically indistinguishable from the more commonly known Tay-Sachs. Unfortunately, there is currently no cure, and this disease is always fatal, typically by age 3. This means that Rachel and Josh are likely to have about 12 to 18 months left with her. Unfortunately, Gracie’s case seems to be progressing fairly quickly and she has already begun to lose major gross motor skills, and resembles more of a 3-4 month old than a 9 month old physically. This will eventually take away all mobility and she will likely need a feeding tube, wheelchair, adaptive equipment, and 24/7 care. Our family is comfort focused, with a goal of enjoying every possible moment with sweet Gracie.

How do you fit an entire lifetime of experiences into one year? Time is the most precious thing, and unfortunately we don’t have enough of it. Any donation will help ease the burden of medical and funeral costs for Josh and Rachel, giving them the opportunity to focus on and enjoy every moment with Gracie.

Rachel created a Facebook page if you wish to follow along. It is called Gracie’s Sandhoff Journey.