It is bittersweet but good to know the process for ALD newborn screening is working in CT. In January, our first CT baby to have ALD was identified. The child is in the care of specialists and will receive the appropriate monitoring and treatments, which if given in the early phase, dramatically improve the outcome of the disease.
This is the statement from the parents, Autumn and Samuel:
“We are so very thankful that ALD is now part of the newborn screening. It has changed what could have been a terminal diagnosis later on, into a diagnosis where our boys have a chance. Because ALD is a genetic disease, our other little boy (2 years) has been tested and is positive for ALD as well. We would not have had an idea of the chance of him having ALD without his little brothers screening until it was too late. One newborn screening has saved both of our boys.”