“Sandhoff disease is a rare genetic disorder that destroys nerve cells in the brain and spinal cord. It usually appears in infancy, but it can occur in children and adults.

Sandhoff disease is a lysosomal storage disorder. Almost every cell in the body contains lysosomes. Lysosomes have dozens of enzymes that break down and digest molecules.

People with Sandhoff disease don’t have enough of an enzyme called beta-hexosaminidase. Lack of this enzyme causes too much fat (lipids) to build up in cells. The excess fat causes damage to the brain and other body systems, usually leading to death in early childhood.

Sandhoff disease is a severe form of Tay-Sachs disease, another lysosomal disorder.” -Cleveland Clinic

As parent’s… Sandhoff is your worst nightmare. Should any parent’s stumble across Aiden’s Story during their battle with this disease, please be gentle with yourself and love your little one as much as you can. There are resources out there to help you with whatever you may face. From other families to generous organizations, do not hesitate to reach out to allow you to help your child be as comfortable as possible.