Her name is Aaliyah, and she was born on October 20, 2012, just 19 days after Florida began screening all newborns for SCID. Along with about 19,000 other babies in the first three weeks of October, Aaliyah was screened for SCID at birth. Aaliyah’s TREC test, the screening test used to detect T-cell deficiencies like SCID, came back positive and her family was notified and brought into the hospital for follow up diagnosis. When the results came back positive for SCID, the family came in to meet with the immunology department and bone marrow transplantation team just six days after her birth on October 26, 2012.
In less than one week, a baby was born, screened for SCID, notified of the positive screening, brought into the hospital lab for diagnostic evaluation, received confirmation of a positive case, and family came in for their first consultation with the immunology and bone marrow transplantation team. Only statewide newborn screening for SCID could make such a fast diagnosis a reality!
Aaliyah is currently living at home in isolation as she awaits her upcoming transplant, which should take place in the next couple of weeks. Heather Smith, co-founder of SCID Angels for Life and IDF volunteer, who lost her seven-month-old son Brandon to SCID and has worked relentlessly to see SCID newborn screening achieved in Florida expressed her elation at the news, “I’m so proud of everyone in Florida who just helped save this little girl’s life!”
To learn more about the IDF SCID Newborn Screening Campaign and how you can get involved in your own state, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign