September 28, 2020

Pause for The GFPD is officially 1 week away!

Below are 8 great ways you can participate leading up to and on Monday, October 5, 2020

June 20, 2020

Happy first day of summer! Due to Covid-19, we haven’t been able to do a lot of things that we had planned since Anna Violet’s health is top priority.  Just as things were looking up in our area, the number of new cases has increased causing reopening in our town to be...

June 5, 2020

Recently I attended the Discovering Our Connections Virtual Family Meetup hosted by the GFPD. I initially attended in support of the GFPD and a desire to learn anything and everything I can to assist my son, Judson. Judson recently celebrated his 6-month birthday and w...

May 21, 2020

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 relate...

May 10, 2020

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 w...

May 3, 2020

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 e...

April 26, 2020

Alone. In the darkness, often feeling so incredibly hopeless. This was my reality of my grief for many, many months after 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 w...

March 23, 2020


February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month old daughter who has PBD/ZSD and she was my travel buddy for Rare Disease Week 2020.
Rare Disease Week 2020 was an amazing experience. It gave me the opportunity to bond with other GF...

March 19, 2020

Anna Violet says "Happy Spring Time" to all of her PBD family! Anna Violet has a lot of things going on and is making some serious strides! Every week she gets visits from some of her favorite therapists. She has physical therapy on Mondays, occupational therapy on Fri...

February 16, 2020

Our family’s journey to receiving Anna Violet’s diagnosis took approximately three months, but time moves a lot slower in the NICU than it does in the real world.  After a traumatic emergency c-section, it took forever for us to finally be able to hold her for the firs...

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