Delaware has officially launched a pilot program to begin screening for SCID! In recognition of the statewide screening, IDF volunteer and SCID mother Donna Sawyer visited the Delaware State Lab with her family on December 29, 2011 to see the new equipment and meet the staff running the SCID tests.
Last year, Donna presented at a meeting of the Delaware State Newborn Screening Advisory Committee to share her personal experience with late and early SCID diagnosis of her two children. Her oldest, a daughter, was not diagnosed until becoming very ill while her youngest, a son, was diagnosed at birth after screening for SCID based on the family history. Her daughter was diagnosed with SCID at 10 months of age and received a life-saving bone-marrow transplant from her mother, but unfortunately she was so ill she suffered multiple organ failures, required dialysis and had a stroke that resulted in permanent brain damage. Meanwhile, Donna’s son received a marrow transplant at Duke when he was just 14 days old and he, unlike his sister, suffered no permanent consequences of the disease.
Donna could not be more pleased to see this goal become reality, “We are very, very happy to see this being done now.”
You can read more about SCID screening in Delaware at http://www.delawareonline.com/article/20111230/NEWS/112300335/Parents-past-worry-will-save-Delaware-babies-lives?odyssey=nav|head
Thank you to all of IDF’s phenomenal volunteers who are working to see SCID newborn screening in all 50 states! 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