Written by Angel Den Mom, Laura
Pamela and her husband Ken are very young parents to two wonderful children, and are just like most families in many ways. The one thing that makes them different from other families in their small town is something that others are not aware of until the family shares about it. Their daughter, Rebekah,who is now five years old, was diagnosed around 3 weeks of age with a very rare Fatty-Acid Oxidation Disorder called Medium Chain Acyl-CoA Dehydrogenase Deficiency. (MCADD).
Children with MCADD have an enzyme that is needed for breaking down medium chain fatty acids that is either missing or not functioning properly. Rebekah's body cannot break down and store the fat needed for fasting for long periods of time or during illness.
Rebekah was born on November 19, 2005 after an uneventful pregnancy. She weighed 6 lbs 2.7 oz and seemed very healthy . After having some time to hold her, a nurse mentioned they would need to take her to the nursery to do a little test that was really “no big deal” and that it would just require a few heel pricks. Since Pamela's niece was born just prior to Rebekah, she was somewhat familiar with what she had heard referred to as the PKU test, so she didn't give it much thought.
After a few days in the hospital, the new family went home,and everything continued wonderfully. Rebekah took well to nursing, and was sleeping well too. The family had no worries and were just enjoying life and watching their beautiful little girl grow.
After several days at home they received a phone call from their pediatrician. He stated that Rebekah needed to come into his office the next day, and that it was a very important matter.He reminded them of the Newborn Screening test that Rebekah had received in the hospital, and stated she had screened positive for a rare disorder called MCADD. He said he was not at all familiar with the disorder, and the only things he knew was that Rebekah could not go for more than 2-4 hours without eating. They would need to learn about MCADD together.Pamela immediately burst into tears at the end of the conversation. Her daughter possibly had a disorder that would change her life and that of her family forever. She was understandably terrified and afraid to even let Rebekah sleep for fear that something could happen.
- To immediately and effectively heighten awareness on the importance of comprehensive newborn screening and its availability and necessity for every newborn.
- To create, promote and facilitate legislation which will mandate comprehensive newborn screening for all fifty states.
- To raise funds through promotional activities and sales to support children and families affected with GA1 and other OA’s (organic acidemia metabolic disorders) through the creation of provisional support programs (including food, vitamin and emotional support efforts.)
Bailey Baio Angel Foundation
21781 Ventura Blvd #473
Woodland Hills, California 91364
Bailey Baio Angel Foundation
is a 501(c)(3) Non-Profit
Non-Profit Tax ID# 26-3316634