November 16th
On January 6, 2021 Governor Mike DeWine signed a bill declaring November 16th Ohio Sanfilippo Awareness Day. Our family created postcards to send out to friends of Oliver asking each one to just pass along the postcard to someone else to raise awareness of this rare terminal neurodegenerative disease.
Children are born with Sanfilippo Syndrome, but it is invisible until they start exhibiting developmental delays or regressions in their early years. It affects 1 in 70,000 children.
Oliver was 3 when Jen and Brian grew concerned about his behavior and reports from his preschool that he was falling behind. Jen checked out stacks of books about discipline and diet and signed up for parenting classes with Brian, convinced they were not good enough parents. Oliver qualified for physical and occupational therapy at school. He received speech therapy as well. Finally, they found out they were great parents. Oliver, however, was born with a single, yes a SINGLE gene defect in his DNA that causes his body to lack a necessary enzyme that breaks down heparan sulfate, a natural cellular waste. This build up of heparan sulfate gradually clogs his body and especially his brain with toxins that cause a cascade of detrimental effects and ultimately death in his early teens. And there is NO CURE! There is no FDA-approved treatment or cure. Clinical trials are happening and other treatment strategies are in pre-clinical research and require funding. (curesanfilippofoundation.org)
wandering gypsy Laurel 