It has been a difficult day for the Sanfilippo community. We lost another beautiful little girl to this horrible disease tonight. Steffany was a fighter - so strong - and passed away with her family surrounding her. Another little girl, Sarah, has entered her final days. Please keep these families in your thoughts and prayers.
As you can imagine, this news hits our family especially hard. We are heartbroken for our friends and terrified for Waverly & Oliver's future. I am going to go give the kids an extra snuggle and kiss as they sleep tonight. Please do the same with your babies.