

Watch Me Mama
We have some exciting developments! These months have been a whirlwind. We are seeing so many incredible things and Marian teetering on...


One Year Forward
On our way to Chicago for her 12 month assessment. When I was little I was pretty sure I’d be on tv one day. My cousin Gina and I used to...


Medical Journey to NPC Diagnosis
She's so small. That was my first thought when I first saw Marian, like a miniature porcelain doll. At Marian's early well baby visits...