Baby with fatal brain disorder ‘saved’ by anonymous $47K donation

A Florida baby who was given just weeks to live is thriving today — and it wouldn’t have been possible without the generosity of an anonymous donor who covered her medical bills.

When Bill and Meg Longhenry welcomed their second child, Millie, in August 2023, they were told she had no hope of survival due to a rare and severe congenital brain disorder called alobar holoprosencephaly (HPE).

HPE affects about one in 10,000 live births, and most infants do not survive beyond the first week, statistics show. Millie was born with the most severe form of the disease.

“We found out that she has a rare brain malformationwhere part of her brain didn’t develop, and the other part didn’t develop correctly,” Meg Longhenry said in an on-camera interview with Fox News Digital. 

“So there’s no division between the two hemispheres and the middle is hollow.”

Doctors told the parents that “Millie should have been a miscarriage or a stillbirth,” her mother said. “She should have died moments after birth.”

“They told us over 95% of patients with this diagnosis don’t survive past the first few months … and anyone who survives past that requires an enormous deal of medical care, like feeding tubes and breathing tubes,” said Bill Longhenry. “Usually they have no brain function.”

While much of her brain is missing, he said, the higher portion is “relatively intact and functioning well,” he told Fox News Digital.

“I started to get the idea that this kiddo is really trying — she’s not on the decline, she’s actually really fighting to live her life in this world.”

“It’s this combination of regenerative medicine, developmental functional neurology, and photobiomodulation that’s sparking and fueling her brain development and building neuroplasticity,” Crawford told Fox News Digital in a separate interview. 

“For example, she can clearly see and she responds to visual cues — yet she doesn’t have the majority of those visual pathways developed in her brain,” he went on. “That means her brain has rewired and remapped the ability to see, and that’s the amazing part, that the brain is able to do that.”

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