Playing in the Park - May 1, 2013

Ethan and I took advantage of the beautiful weather today and spent some time "playing" at our neighborhood park. I hope you enjoy the pictures. Ethan seemed to have a great time, at least for a while. He HATED the grass!































Comments

  1. Love the pictures. So sweet.
    God bless - Sue W.

    ReplyDelete

  2. Those are such cute pictures, even the ones of him crying. Too funny he doesn't like the grass. :) He is getting so big and is super adorable. Thanks for sharing.

    ReplyDelete

Post a Comment

Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

Image
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. 
















Read more

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…
Read more

2017 GFPD Conference Recap

Image
On July 13th and 14th over a hundred scientists, clinicians, and students came to Washington D.C. to attend a conference focused on the Development of Therapies for Peroxisome Biogenesis Disorders. The keynote speaker was Dr. Francis Collins, the Director of the National Institutes of Health (NIH).


As a parent of a child affected by PBD-ZSD it is hard to adequately describe how much it means to know that there is growing interest in finding treatment for rare diseases.

In addition to the scientific portion of the conference was a separate conference designed specifically for families. More than 40 families from the US, Canada, and the Netherlands came together in the largest GFPD Family Conference to date. Check out the welcome video below.



Jen Kerckhoff, a fellow GFPD Board of Directors member, wrote a wonderful article about her experience which you can read on the TulsaKids blog. Jen is one of just two members of the Board of Directors who is not a parent of a child who has been di…
Read more