A trip to the ER requires me to put fear aside and advocate for my son

“Mom. Mom!” I turn away from loading the dishwasher to find my daughter yelling for me and looking a little scared. “What’s up, sweetie?” “Daddy’s yelling for you. Will’s hurt. There’s a lot of blood.” My heart jumps as I tell her to finish getting ready for bed, and then…

Medical Alert Cards for Sanfilippo Patients

Sanfilippo syndrome is such a rare disease that most physicians are unfamiliar with it. If your child has Sanfilippo and experiences an emergency, medical personnel may not fully understand what is happening or any additional risks that certain procedures or medications might pose for your child. Therefore, medical alert cards…