WELLS, Maine (NEWS CENTER) -- People in Wells are rallying around a three-year-old boy who suffers from a rare terminal illness. Spencer Smith has Sanfilippo Syndrome -- also known as childhood Alzheimer's. Children can experience dementia and lose skills such as speech and other milestones. The community is helping raise money for research which Spencer's family hopes will eventually lead to a cure and save his life
Spencer started losing his hearing around the age of one. That led to genetic testing and a diagnosis of 'Sanfilippo Syndrome.' A rare neurodegenerative disorder that affects one in every 70-thousand children.
His parents say Spencer's clock is ticking
"Eventually, most kids die when they are in their teenage years."
The syndrome, which is nicknamed 'children's Alzheimers,' is caused by a single gene defect. Spencer is not able to break down sugars in the body because of a missing enzyme. Besides brain damage, there can be hearing and vision loss, organ damage and seizures.
When Eddie Hanson heard about Spencer's struggle he wanted to do something special for him at Christmas time. Hanson, who has a son on the autism spectrum, is the creator of a fish tank called an 'iQuarium'. He often donates the interactive tanks, which have lights and speakers to children in Maine with developmental disabilities. Parents and teachers say the tanks have sparked communication in some of the kids for the first time.
'I think it's pretty amazing what he is doing not just for us but for other kids too,' said Hanson.
Spencer wears hearing aids and has some delays but hasn't shown any signs of regression. His parents are raising money which will go to research which could lead to clinical trials and a possible cure. The Wells High School wrestling team -- which Spencer's Dad was a member of -- is fundraising for Spencer all season long -- the toddler's face is even on their jerseys.
For more information on how you help donate for research into finding a cure for Sanfilippo Syndrome, you can go to https://www.gofundme.com/mypalspencer
Wells High School Wrestling Team, FB Facebook @WellsSportsPhotos
Cure Sanfilippo Foundation, www.curesff.org
For more information on iQuariums www.aquatreaquarium.com