The story of Lauren

Only 26 days after the birth of our third born son, we received a call from the pediatrician’s office about an abnormal newborn screening test, called X – linked Adrenoleukodystrophy (X – ALD). After a visit to the Children’s hospital of Philadelphia, and further testing, it was confirmed that our baby had X-ALD. The disease was added to the newborn screening in 2017, and our oldest son was born in 2016, so we had him tested, and found out he also had X-ALD. Our middle child was born in 2018 and was screened for the disease, but it was not flagged. After further testing, it was confirmed he has the disease too. All three boys have a rare genetic condition.