Getting kids out the door to school is no easy task for any family. Add in Sanfilippo Syndrome and it takes new levels of planning ahead, timing, and effort.
Join Erin, mom of Olivia, as she gives you a look inside their morning school-day routine. From Liv waking up to getting her on the school bus, and everything in between. Join Erin for the ups and downs of dealing with a nighttime diaper leak, waking up little brother Liam, a washing machine mishap, and getting Liv’s hair ready for a busy day at school. She bravely shares it all.
Life with Sanfilippo Syndrome presents unique challenges to every aspect of life. Families of children with Sanfilippo Syndrome are generously sharing how they tackle an aspect of their life to ensure their child has the best care and quality of life.
Sanfilippo Syndrome is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years. It is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death. Sanfilippo Syndrome is often referred to as being like Alzheimer’s, but in children. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.