The GFPD was founded in 2010 to fill an unmet need to provide support to families facing one of several types of peroxisomal disorders. Today, we provide targeted support to patients affected by peroxisomal biogenesis disorder-Zellweger spectrum disorder and the related single enzyme deficiencies. Generally speaking, peroxisomal disorders can be broken into two categories: peroxisomal biogenesis disorders and single enzyme/protein deficiency disorders. They are diagnosed and
I have often been asked what it is like being the mom to a child with a peroxisomal disorder. The first time I was ever asked this question, I simply responded with, “It’s no different from being a mom to a typical child.” But in reality, it is very different- it is wonderful, scary, adventurous, challenging, fun, and a journey full of blessings.
My daughter Anna Violet is one year old. She is deaf and blind with many health complications. She makes being her mom the
Alone and in the darkness, often feeling so incredibly hopeless: this was the reality of my grief for many, many months after my daughter, Lily, left this earth. Most don’t get the utter despair that comes with watching your child take their last breath. It’s hard to explain to others what it’s like feeling so empty- like there is a gaping hole in your heart that is never ever going to be filled. Then you add the complexity of having already lost one baby, taken before I coul