Alone. In the darkness, often feeling so incredibly hopeless. This was my reality of my...
February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month...
Anna Violet says “Happy Spring Time” to all of her PBD family! Anna Violet has...
Our family’s journey to receiving Anna Violet’s diagnosis took approximately three months, but time moves...
Most peroxisomal disorders are rare, genetic (autosomal recessive) conditions that are often terminal and affect...
A patient with either type of peroxisomal disorder (peroxisomal biogenesis disorder or single enzyme protein...
After following a year in the life of Archer in 2019, this year, we will...
As 2019 draws to a close, I’m filled with gratitude for our past and present...
It is hard to believe 2019 is coming to a close soon. As a new...
“Christmas is usually one of my favorite holidays. I am one of ‘those’ parents who...