I just spent some time reading a little girl's Caring Bridge site. She has Sanfilippo and is in the final stage of the disease. Her little body is shutting down and she has been sent home with hospice. She is 11 years old. Please keep her and her family in your thoughts & prayers.
I am 3.5 years into my Sanfilippo journey. This news never gets any easier. I cannot help but calculate Waverly & Oliver's ages - wondering how much time they have left. I am trying to recenter myself, focusing on the here and now. Hoping for a miracle cure that can intervene and extend my time with my babies.