It is with a very heavy heart that I am writing tonight. I just received word that a brave boy with Sanfilippo passed away just moments ago. His name was Joey. I never had the pleasure of meeting him, but I have friends who have. They all said he was an incredibly sweet and handsome young man. His mom has been a constant source of information and support for many of the families. Her experience has been so valuable for many of us. My heart breaks for this family. Please keep them in your prayers.
Rest in peace, Joey.