The first 48 hours of a baby’s life can be critical for identifying potential health problems, which is why newborn screenings are critical.

The Minnesota Department of Health (MDH) on Friday announced that Commissioner Dr. Brooke Cunningham has approved adding metachromatic leukodystrophy (MLD) to the list of conditions screened for.

“If babies are found early to have this condition, different treatments and interventions can start before symptoms develop,” said Carrie Wolf, the newborn screening program manager. “Then it can prevent adverse outcomes.”

For the last 15 years, Erica Barnes has been honoring her daughter’s memory by fighting for this screening to help other families who face the devastating diagnosis.

“Chloe was born happy and healthy, we didn’t think anything was wrong,” said Barnes.

As a trained speech pathologist, Barnes explained she started seeing subtle signs that concerned her when her daughter was about a year old.

“Chloe was struggling with some of the things she wanted to do,” she said. “The way I described it to the pediatricians when we started raising concerns was that it seemed like her brain wanted to do things and she couldn’t get the message to the rest of her body.”

Physical therapy was the first recommendation they received. They sought a second opinion from another pediatrician, which led to an MRI and other tests. It took about nine months to get a diagnosis. Her daughter Chloe was diagnosed with MLD just after she turned two years old.

“Probably the most horrific thing you can imagine,” said Barnes. “What the neurologist told us was, ‘Your daughter has an aggressive neurodegenerative disease, first she’s going to lose her ability to walk, then she is going to lose her ability to talk, she will then lose her ability to swallow and breathe.’”

Chloe passed away a few months later in 2010 due to complications from a bone marrow transplant, which Barnes said they’d hoped would improve her quality of life. There was no treatment available.

It wasn’t until 2024 that the FDA finally approved the first gene therapy for children with pre-symptomatic late infantile, pre-symptomatic early juvenile or early symptomatic early juvenile MLD.

“Newborn screening is truly the only pathway that identify these children in time to intervene and save their lives,” said Barnes, who is also the executive director of Minnesota’s Rare Disease Advisory Council.

MDH expects to start screening for MLD in 2026. There are currently more than 60 conditions the state already tests for, which is higher than the roughly 30 that are recommended by the CDC.

Minnesota is only the third state to add MLD, according to Barnes. The progress on the state level comes as there are setbacks on the federal level.

The Advisory Committee on Heritable Disorders in Newborns and Children, which makes recommendations to the federal government for additional screening, was terminated in April.

“We were set to have MLD added today, it should’ve been added federally,” said Barnes. “We estimated if MLD was added at the federal level, we would pick up 30 to 40 children a year. Upwards of 40 children is a child a week we would identify and save their life.”

She plans to continue to fight to have it added to the federal list.

“We aren’t going to give up,” said Barnes.