Texas mom Jennifer Garcia has made it her life’s mission to educate others about SCID and the importance of newborn screening since her son Cameron died of this devastating disease on March 30. Jennifer and her husband had already had a healthy boy and were not anticipating any issues when Cameron was born late last year. Unfortunately, without a family history and only spotty newborn screening for this condition throughout the country, it is very unlikely that a baby with SCID will be identified and diagnosed until the child becomes very ill. In Cameron’s case, by the time he was diagnosed with SCID his little body was suffering with meningitis and pneumonia and needed machines to breathe.
Now Jennifer has thrown herself into volunteer work, working with doctors and nurses at various hospitals to recruit Texas hospitals to participate in a pilot program for SCID screening that was implemented by the state Department of State Health Services. She has also met with state legislators and other officials to discuss the importance of adding SCID to the Texas newborn screening panel so that all babies born in the state will be screened, not just those who are fortunate enough to be born in one of the hospitals participating in the pilot study. Jennifer has taken the most horrifying experience that can happen to a parent and turned it into fuel for creating a positive change for many more parents and families. She says she will not stop pushing until all babies born in Texas are screened for the condition that took her son’s life. You can read more about Jennifer’s story at http://www.theeagle.com/lifestyles/Cameron-s-story–CS-baby-s-death-puts-rare-disease-in-focus–6709820 .
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state! Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved. To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign