Blogs by Emily

Image for With The New Year Comes Difficult Feelings

With The New Year Comes Difficult Feelings

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More

Image for Finding Peace with My Sister’s Diagnosis

Finding Peace with My Sister’s Diagnosis

One significant aspect of Sanfilippo syndrome is its life expectancy — many of those with the disease don’t live beyond the age of 20. My sister, Abby, is a special case. She turned 24 in August, so she’s much older than most of the Sanfilippo kiddos we know. Read More