Alabama Fact Sheet

Beth adopted her lovely daughter, Eden, at 18 months old. When she
was adopted, Eden was experiencing severe developmental delays and malnutrition. Initially, Eden improved after getting nourishment, but her progress plateaued at nearly two years old when she stopped achieving milestones.

Beth fought hard to get Eden an MRI and other medical tests. It wasn’t until an ER visit shortly after Eden’s 2nd birthday that they were able to get an MRI and genetic testing, which came back with a devastating diagnosis: Eden had MLD.

Beth went from working full time to part-time in order to care for her daughter. Eden had significant brainstem issues. This meant problems with feeding, breathing and more. Though she moved around while managing Eden’s care, Beth settled back in Alabama near family after Eden passed at the age of seven.

Despite the suffering Eden endured, Beth was met with Eden’s smiles throughout her life. For Beth, MLD newborn screening means a chance for other families to get the care they need as early as possible.


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