Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.
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Several years ago a friend shared with me that she had been confronted by at least one person from her church about her daughter's disabilities and her so called lack of faith that God could heal her daughter, or that there must still be some sort of sin in her or her families lives, etc. that was hindering God's healing or that was responsible for the disability in the first place. My heart broke as this sister in Christ shared this with me. Just yesterday another dear friend of mine had something very similar happen to her, regarding her son's illness. Thankfully, we have not (yet) had anyone tell us that if we only had enough faith that Ethan would be healed or ask us what sins in our lives caused Ethan's disabilities. However, to many people that I have become close with since becoming Ethan's mom have had these hurtful things said to them.
DISCLAIMER: I do believe that some children are born with or develop disabilities because of the sinful actions of their p…
Today, October 5, 2015 is GFPD's #5 Birthday! In honor of this special day,The Global Foundation for Peroxisomal Disordersis asking you to#PAUSEforPBD! For all that know Ethan, and other children and families devastated by Peroxisomal Biogenesis Disorders (PBD), please consider taking a moment to reflect, honor, pray, light a candle, pray, post a picture, donate, write a note, or do something to #PAUSE for our children and families. Visit www.thegfpd.orgfor more information on PBD and the mission of The Global Foundation for Peroxisomal Disorders.