The Two Year Mark
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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.
Watch Me Mama
One Year Forward
Marian is Singing
The Next Ultrasound
Six Months and Counting
Turning Two
To 400 And Back Again
Hearing Check
Life on the Line
Medical Journey to NPC Diagnosis
Science and Hope in Arizona
Weekend Snapshots
What (Not) To Say
Number Four
Carousel With Friends
Prima Ballerinas
Good Things
The Second Treatment
Scary Coughs