MLD, Metachromatic Leukodystrophy is one of many leukodystrophies, a neurological disorder that has no cure and no treatment, especially if it is not detected before age of 3 months, such as in utero or during newborn screenings. The life expectancy for these disorders is short, oftentimes less than 3 years.

The Council of Newborn Screenings at the Alabama Department of Public Health approved testing for this rare genetic disorder (MLD) in December of 2025. However, the ADPH has elected to wait up to 3 years before doing this screen. My question is “Why wait?”

For a baby born with MLD, if this diagnosis is not made before the age of 6 months, the baby is then too old to benefit from gene therapy, such as stem cell transfer, which can make a huge difference in the lives of these babies.

Imagine you have a beautiful healthy baby developing normally but gradually, and then suddenly, your baby begins to lose all the milestones they’ve gained. Their progress is now in regression. Your baby that was previously cruising around furniture, speaking some words, is now dragging one leg, drooling excessively, not speaking, not able to sit upright, and now has a tremor in their hands.

Imagine taking your baby to a pediatric neurologist who diagnoses your baby as having a rare genetic disorder. And now, even though your baby just turned 2 years old, he or she is too old to benefit from current therapies which would have given your baby a fighting chance at living a longer life and in less pain. Perhaps if your baby had been screened at birth, your family could’ve been spared heartbreak, devastation, and overwhelming fear.

It is for this reason I am starting this online petition to employ the ADPH to begin testing for MLD now, not later. Although the screening is too late for my grandbaby, if even just one newborn can benefit from this screening that saves him or her, and their family, then I believe it is quite worth it.

Please join me by signing this online petition to have MLD, a rare genetic disease, be screened for now, instead of later down the road. I am not asking for money, only your signature. Let’s send at least a thousand signatures to ADPH Department of Newborn Screening.

Gratefully, prayerfully, and heartbroken,

Dr. Vanessa Ragland