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Take the time to learn about Zellweger syndrome

Tuesday, October 8, 2019   (0 Comments)
Posted by: Andrea Guidi
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By Jessie Evans

www.bendbulletin.com, 10/4/19

 

On June 7, 2019, on the floor of our living room, I held my 7-month old son against my chest as he took his final breath. My husband and I clung to him and to each other as our hearts broke in ways we never thought possible. I wept uncontrollably as I held him and kissed him for the last time.

We welcomed Brady James into our world in November 2018. The NICU team whisked him away as soon as he was born. He was not crying. I saw the NICU nurses lifting his limbs and allowing them to drop to the table almost lifelessly. He had an oxygen cannula placed. The NICU team kept stealing glances at me as I sat there crying, asking if he was OK. I know now they were looking to see the face of a mother who was about to hear the worst news possible, a mother whose life was about to change forever.

 

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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