ORLANDO, Fla. – An update on a story News 6 has been following since 2025. Starting today, some newborns in Florida will be screened for a rare liver disease.
As News 6 has reported, Mattie Beacham from Orlando was born with the rare liver disease, biliary atresia, that went undiagnosed for months.
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Her parents say, as a result, she’s had to have multiple surgeries and even lost her hand.
Since then, her parents have been working to change laws to require universal screenings for the disease at birth.
While “Mattie’s Law” stalled in the state legislature this spring, a $600,000 pilot program was approved. “Mattie’s Biliary Atresia Newborn Screening Pilot Program” will begin with newborns at AdventHealth for Children.
Mattie’s parents say had their daughter’s disease been caught earlier it would have prevented a lifetime of complications...
“This thing should have been flagged, and had it been flagged we wouldn’t be speaking with you today,” said Allison Walker Beacham, Mattie’s mom.
“It’s a time bomb disease,” said Michael Beacham, Mattie’s dad. “If you catch it at birth and you fix it before 30 days, there’s a 68% chance they won’t need a liver transplant, and if they do, it’ll be when they’re 10 or 11 or 12 (years old).”
Mattie’s parents are hopeful other hospital systems will soon join the program.
Meantime, they continue to advocate for statewide and nationwide screening programs for rare-liver disease.