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Showing posts from March, 2015

Please Support Illinois HB 2790!

Below is an email from Illinois Representative Laura Fine. Rep. Fine is introducing legislation that will add the test for ALD (which also identifies other peroxisomal disorders such as PBD-ZSD and DBPD) to Illinois' newborn screening panel. In her email she outlines ways that both IL residents and those living elsewhere can show their support for this legislation. Identifying children born with ALD (boys and girls who are "carriers") will save lives! Identifying children born with PBD-ZSD or one of the other peroxisomal disorders will give parents the information they need to seek out the best interventions and treatments for symptoms as they arise. All the families who are made aware of one of these diseases will have the knowledge needed to make informed choices about future family building and be able to let other family members know if they may be at risk for either having or passing on these diseases to the next generation. Please take a quick moment to show your …

Family Building after the PBD-ZSD Diagnosis

About a week ago I came across a blog "Pregnancy After Loss Support" and a particular post titled, "Dear Courageous Mama Parenting Her Baby Born After a Loss" by Lindsey Henke. This blog and post are written for moms who have experienced miscarriage(s) and/or infant death(s) but it still spoke to me in a very deep way, because although Ethan is still alive there has still been (and continues to be) a loss. A loss of hopes, dreams, and expectations both for Ethan and for us as a family. Our lives, because of PBD-ZSD, are filled with grief, the grief of what we have already lost, what we are currently losing/missing out on, and what we will one day lose. We hate PBD-ZSD!

I feel like a lot of these same thoughts and emotions expressed in Lindsey's post are also experienced by moms (and dads) who add to their family (by birth or adoption) following a diagnosis like ours. PBD-ZSD impacts every major system in Ethan's body. Approximately half of all children bor…