Spencer is the son of Alli and Nate Smith (pictured on the left). Nate is a former Wells High School star wrestler. We had the chance to speak with Spencer's grandmother, Charlene who is a resident of Wells, and if you haven't heard Spencer's story yet, we would like to help raise awareness and also do our part in helping to find a cure for this little guy and the many others who are dealing with the same challenges he is.....Spencer was diagnosed with
Sanfilippo Syndrome
, otherwise referred to as
"Childhood Alzheimer's Disease
". He and his family received this diagnosis when he was 2 years old. What started as a possible hearing problem turned into fighting for a cure for a rare, and as of yet, incurable fatal neurological disease which eventually results in loss of basic skills like walking and talking. As the disease progresses, Spencer could experience bouts of extreme sleeplessness, hyperactivity and seizures.
As you can imagine, this family and the village that supports them is dedicated to finding a cure and saving Spencer's life through fundraising--there are not enough cases to be considered "worthwhile" for pharmaceutical companies to fund the research to find a cure. So the family has set up a Go Fund Me page to help raise enough money so they can fund the research and the clinical trials.
Spencer is now 4 years old. He has not lost his communication skills-says some words and uses some sign language. He has daily therapy sessions to maintain what he has learned and is in a fight against time.
If you can help us spread the word to help this family, we would be so grateful.
