A $47,000 anonymous donation to a baby from Florida with a rare brain disorder has saved their life. Without the help of this big-hearted stranger, Bill and Meg Longhenry's baby, Millie, may not have been alive today.
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Millie's Fight Against A Rare Brain Disorder
In August 2023, the married couple had Millie but were given the devastating news that she wouldn't survive. Doctors diagnosed Millie with a rare birth defect called alobar holoprosencephaly (HPE). It's the most severe form of this disorder, and doctors said Millie "should have been a miscarriage or a stillbirth."
According to Cleveland Clinic, it presents itself in around 1 in 16,000 births. They also state that babies with alobar HPE, like Millie, typically die shortly after birth or during their first six months.
"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," said Meg to Fox News Digital, per the New York Post. "So there's no division between the two hemispheres and the middle is hollow."
The father then explained how difficult it is for someone to survive this disorder. "Anyone who survives past [the first few months] requires an enormous deal of medical care, like feeding tubes and breathing tubes. Usually, they have no brain function."
Bill and Meg were preparing for the worst, but they still weren't giving up just yet. The hospital sent Millie home on hospice care after two months in the hospital with only a few more months to live. But as Bill said, "God had something else in mind."
The couple got in contact with Dr. Brandon Crawford through a friend's recommendation. He's a functional neurologist who specializes in non-invasive techniques, foregoing drugs and surgery. They visited him at the NeuroSolution Center of Austin and after looking at Millie and her MRIs, Crawford had hope.
He noticed that the higher portion of Millie's brain was still "relatively intact and functioning well." This was despite much of Millie's brain missing. "I started to get the idea that this kiddo is really trying," said Crawford. "She's not on the decline, she's actually really fighting to live her life in this world."
That's when Crawford began treating Millie. The neurologist said it was a "combination of regenerative medicine, developmental functional neurology, and photobiomodulation."
A Miracle Mystery Donation
During this intensive treatment one month ago, Bill and Meg were beginning to get worried about their finances. The possibility of cancelling further treatments came to mind for how expensive these treatments are.
Then came a miracle. On March 27, Crawford was about to perform one of the last treatments they could afford for Millie. Suddenly, hours into the medical procedure, they received a mysterious phone call. "It was another patient who has been following Millie's story," said Crawford. "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."
The anonymous donor granted more than $47,000 for Millie's brain disorder treatments. "It's just impossible to understand that level of generosity from a stranger," said her father. The couple eventually found out who the patient was and called to thank her for the generous donation.
Ever since these treatments have continued, Millie has grown stronger and developed smoothly. "We're working on crawling with her right now—that's unheard of for this," said Bill. "Her joint attention continues to improve, even her ability to eat."
The parents described Millie as having "a spunky little personality," and she has learned how to say "Mom" and "Dad." They have also given praise to God for helping them along the way.
"We serve such a big God that he is greater than our biggest fears," said Meg. "He is the greatest physician, and he aligns us with where we need to be and who we need to be."
