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...
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Our First Year Post Diagnosis
At diagnosis in 2017, I began recording my experience supporting Marian through her first year post diagnosis and utilizing expanded access of adrabetadex, originally titled, "A Mom's Journey to Fight For Her Daughter's Life...And Some Every Day Stuff Too."
I hope these entries can help NPC families feel supported, find hope and for others to connect with the experience of receiving this diagnosis and advocating for children and adults with NPC.
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