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IDF Volunteer and SCID Mom takes her Story to the CDC


Heather with her son, Taylor, and husband, John

IDF Volunteer Heather Smith is the mother of two sons diagnosed with Severe Combined Immune Deficiency (SCID).  Tragically, her first son, Brandon, passed away as a result of late diagnosis of this devastating disease.  Because of this experience, Heather knew to look for SCID when she became pregnant with her second son.  As a result, Taylor was diagnosed while still in the womb and was able to receive a life-saving bone marrow transplant early enough to give him the functioning immune system he otherwise would not have developed. 

Heather has chosen to use her heartbreaking experience to work with IDF on the SCID Newborn Screening Campaign with the goal to have SCID added to the newborn screening panels in all 50 states.  In addition to working with the Department of Health in her own native Florida, Heather also presented her harrowing story before a national meeting on SCID newborn screening hosted by the Centers for Disease Control and Prevention (CDC) in Atlanta, GA on October 28, 2010.  You can watch the video of Heather’s story that she presented to the CDC for yourself by tuning in to the Advocacy Channel on IDF’s Advocacy Center. 

http://www.primaryimmune.org/idf-advocacy-center/idf-advocacy-channel/

Please also let IDF know if you are involved in any Community in Action in your community! Comment below or fill out the Contact form at the top of the page to have your story featured in a future blog post.

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