GFPD's Winter 2013 President's Letter

As most of you know, the Global Foundation for Peroxisomal Disorders (GFPD) has become our second family since Ethan's diagnosis and we are very involved with the organization. I feel honored to serve on the GFPD Board of Directors as the Registry & Support Group Coordinator. We are a completely volunteer ran organization and all of our Board of Directors are parents of children (living or deceased) impacted by PBD-ZSD.

I'd like to invite you to take a few minutes to read GFPD's Winter 2013 President's Letter and check out what we've been doing this year.

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"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall it is our hope that in the end that we will bring glory and honor to the Lord. God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit. All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL. We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD.

Glasses --- Take 2

Last night we picked up Ethan's new glasses. Today he wore them for almost two hours in the morning, an hour in the afternoon and 45 minutes in the evening.

The Journey We Are On.....

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