- Current Age:
- Home State:
- New York
- Diagnosis Date:
- October 3, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- Bill and Christine
- Ella and Matthew
What it felt like when we learned our child has Sanfilippo Syndrome…
When our geneticist told us that Jacob had Sanfilippo Syndrome, we could not believe what we heard. Once we were told more about the disease, we were both filled with a deep, profound sadness. Our lives would be altered forever.
WHAT OUR CHILD LOVES MOST IS…
Jacob loves to jump on the trampoline and sing songs. He loves Toy Story, especially Buzz Lightyear. Jacob also enjoys eating and some of his favorite foods are pancakes, bacon, pepperoni pizza, Korean BBQ, spaghetti and meatballs, raw peppers, and nearly any type of fruit!
The hardest part of being a Sanfilippo parent is …
Seeing the judgments of other parents when Jacob is having a difficult time. Giving up some part of our normal lives either socially or professionally. Never feeling comfortable that we could leave anyone with Jacob. Knowing that every day, Jacob gets farther away from us.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Cure Sanfilippo Foundation is providing hope to the thousands of Sanfilippo children across the world by funding research to find a cure for this rare disease. Join Jacob’s journey and provide us with hope that our lives can change one more time.