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

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Anonymous donor paid $47K for baby's medical bills, family says

Florida parents Bill and Meg Longhenry speak with Fox News Digital about how baby Millie is defying the odds of her brain disorder — and how a stranger's generosity helped make it happen.

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.

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"We found out that she has a rare brain malformation where 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."

Millie Longhenry (left) was diagnosed with a severe congenital brain malformation called alobar holoprosencephaly (HPE) at 2 months old. (Nadine B. Photography)

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."

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After spending two months in the hospital, Millie was sent home on hospice care with four to six months to live — but the Longhenrys weren’t ready to give up.

"God had something else in mind," said Bill Longhenry. "God had a different plan, and only God was able to really make that decision."

"Millie should have been a miscarriage or a stillbirth," doctors told the baby’s parents.

A friend recommended that Millie’s parents connect with Dr. Brandon Crawford, a functional neurologist at the NeuroSolution Center of Austin, who specializes in using non-invasive techniques without drugs or surgery.

Upon reviewing MRIs and examining Millie, Crawford said he saw "huge potential."

Millie, pictured with her big brother, Theo, was born with the most severe form of alobar holoprosencephaly. (Nadine B. Photography)

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."

Defying the odds

Under Crawford’s care, Millie began a treatment plan that included laser light therapies, acoustic wave therapy that uses sound waves to stimulate natural healing processes, and primitive reflex integration, which "retrains" the brain-body connection and helps babies learn to better control their movements.

Dr. Marcella Madera, a neurosurgeon who serves as NeuroSolution’s medical director, also collaborates on Millie’s treatment to ensure safety and efficacy.

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"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."

At NeuroSolution Center of Austin, Millie began a treatment plan that included laser light therapies, acoustic wave therapy that uses sound waves to stimulate natural healing processes, and primitive reflex integration. (Bill and Meg Longhenry)

Bill Longhenry describes the treatment as "combining physical therapy with neural functions."

Today, Crawford said, Millie is not only surviving, but thriving — something that is very rare for this condition.

"She continues to grow and develop and is getting stronger," he said. "We're working on crawling with her right now — that's unheard of for this. Her joint attention continues to improve, even her ability to eat."

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Millie is also starting to vocalize, Crawford said, saying "Mom" and "Dad" and communicating with her big brother, Theo.

"She's got a spunky little personality, and it's amazing," he said. "Honestly, if you look at her and interact with her in person and then look at her MRI, you wouldn't think it's the same kid."

Millie is smiling, laughing and responding to her name. She also understands people’s speech and uses sign language, her family said. (Nadine B. Photography)

Millie is smiling, laughing and responding to her name. She also understands people’s speech and is using sign language. 

"Millie would not be here today if we weren't doing the different things to help her brain, to help her rewire," added Meg Longhenry.

Answered prayers

Last month, Millie’s family faced the possibility of canceling her intensive neurological therapy due to financial constraints.

Meg Longhenry had recently let Crawford know they would have to skip their next treatment due to lack of funds — but he told her to come in anyway.

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"I said, don't worry about it, just come. There's no way I'm dropping care with Millie — we've come too far."

On the morning of March 27, as Crawford’s team was about to perform another regenerative medicine procedure with Millie, they prayed for divine intervention, he told Fox News Digital.

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"A couple of hours later, we got the random phone call," he said. "It was another patient who has been following Millie's story, and she said, ‘I feel like I'm supposed to donate something for Millie’s case,' and my front desk said, ‘Well, that would be amazing.’"

Bill Longhenry is pictured holding his daughter, Millie. "She continues to grow and develop and is getting stronger," he said. (Bill and Meg Longhenry)

The donor offered to cover the total outstanding balance for Millie’s treatment — more than $47,000.

"It's just impossible to understand that level of generosity from a stranger," said Bill Longhenry. 

"We have to pursue this treatment, but it's not covered by insurance, so we're just doing whatever we can to make it work."

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Ultimately, the Longhenrys did find out who covered the medical expenses — a previous patient of Dr Crawford’s. They were able to call her and thank her for the donation.

While this anonymous gift clears a major financial hurdle, Millie’s journey is far from over, the family shared. 

Millie is pictured with her big brother, Theo. In March, an anonymous donor called NeuroSolution Center of Austin and offered to cover the Longhenrys' outstanding medical debt. (Bill and Meg Longhenry)

She will require follow-up therapy every four to six months, specialized home equipment and travel for continued care, which insurance does not cover.

"I think the finances are always really scary for us … but there's not a price that I could put on her life," Meg Longhery said. "I'll continue to fight and do what I need to do so she can have the best life that she can."

"There's not a price that I could put on her life."

The family also relies heavily on their faith, believing that Jesus worked through Dr. Crawford to help save Millie’s life, according to her mother.

"We serve such a big God that he is greater than our biggest fears — he is the greatest physician, and he aligns us with where we need to be and who we need to be," she said.

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"And it's so encouraging to see the growth that we were told repeatedly we wouldn't see."

For more information about Millie’s journey and progress, people can visit MovingMountainsForMillie.org or @movingmountainsformillie on Instagram.