Scott and Renee Baio Introduce the Bailey Baio Angel Foundation
In June, Scott and Renee Baio opened up about the health scare they suffered last fall when daughter Bailey DeLuca received a positive result for a potentially deadly metabolic disorder known as glutaric acidemia type 1 (GA-1). Discovered during her extended newborn screening test, Bailey underwent a 7-layer tissue test before doctors concluded that the initial result had been a false positive. Deeply relieved by the news, Scott and Renee were nonetheless shocked to find that many states do not require an in-depth version of the extended newborn screening test (ENBS) — meaning that precious treatment time may be wasted for children that are afflicted with disorders such as GA-1.
In an effort to increase awareness about the need for extended newborn screening tests in all states, Scott and Renee have created the Bailey Baio Angel Foundation, which launches this week. Teaming with Savebabies.org, the Baios have filmed a public service announcement to promote September’s National Newborn Screening Awareness Month, and will be speaking at tomorrow’s Save Babies Through Screening Foundation press conference, held at UCLA’s Mattel Children’s Hospital. Located at 757 Westwood Plaza in Los Angeles, the event begins at 11 a.m.
|Italian Fest Onesie|
In addition, the couple will be auctioning off items in their eBay boutique (Scott will sign them if you ask!) to help GA-1 affected children. The first recipient is 5-year-oldLily Rodrigues. Born in Colorado, Lily was administered the standardnewborn screening test immediately after her birth — but not of theexpanded variety, like that offered in California. As such, doctorswere unaware that she was in fact afflicted with GA-1; After ametabolic crisis in 2004, she was left with irreversible brain damage. That her condition could have been detected — and her injuries couldhave been avoided — had her mother only been offered the ENBS at anadditional cost of $25 is heartbreaking for the Baios. After financing a July trip for Lily’s mother Sarah to the 2008 FOD/OAA NationalMetabolic Conference in Pittsburgh, PA, the Baios now want to do more. Besides their eBay venture, in the coming weeks, the couple will begin accepting monetary donations via the foundation website, as well as making awareness bands, and logo-printed baby bibs, onesies, and infant and adult shirts available for purchase.
Recent photos of 10-month-old Bailey below!
|Baby Lulu Top & Bloomers|
|Pumpkin Patch Dress|
|Italian Fest Onesie|