Kentucky miracle baby defies odds, celebrates 1st birthday amid rare disease battle

KNOTT COUNTY, Ky. - By all accounts, Harmony Mullins was not expected to survive to see her first birthday due to a rare disease. 

But on February 17, the Kentucky miracle baby proved her doctors wrong when she turned one year old and celebrated with her five older siblings, parents, relatives, friends, and the local community. 

"To celebrate a day that you never expect to happen is very humbling," her mother, Toni, told FOX Television Stations. "It was just a magnificent experience."

Getting diagnosed with peroxisomal disorder

Shortly after Harmony was born, she was diagnosed with a peroxisomal disorder on the Zellweger spectrum.  According to The Global Foundation for Peroxisomal Disorders, symptoms can include hearing and vision loss, hypotonia, neurological issues, seizures, developmental delay, feeding issues, adrenal insufficiency, leukodystrophy, and liver, kidney, and bone disease.

Harmony Mullins celebrated her first birthday despite battling a rare disease. (Credit: Toni Mullins)

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"Right now, Harmony's biggest concern is her liver," Toni continued. 

Harmony's condition has hindered her development, according to her mother. Harmony has moderate hearing loss and her brain sometimes has difficulty processing what she sees even though her eyes are fully developed. 

"Of course, I was heartbroken. I just didn't think anything was wrong with my perfect newborn baby," Toni said, referring to when Harmony was born. "But I did have the intuition that something was wrong."

Harmony Mullins with her family. (Credit: Toni Mullins)

"For many weeks, I grieved over her loss. I grieved about what could happen to her. I grieved about the dreams I had for her," she added. 

'She is joyful and happy to be alive'

Despite the diagnosis and prognosis, Toni said her youngest daughter chose to be a fighter rather than a victim. 

"It would be very easy to look at Harmony and feel pity and hurt over her and the things that she goes through and her disease," Toni explained. "But really she doesn't have any of that worry or concern. She is joyful and happy to be alive."

Toni gives the biggest credit for Harmony's journey to her family's Christian faith, saying that Harmony's liver condition has shown signs of improvement. 

"So 100%, I credit that to prayer from a community that loves her," she explained. "We have seen magnificent results in her test that the doctors can't explain."

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Toni added that, if anything, she has learned many lessons from Harmony, including taking it one day at a time and not worrying about the future. 

"If anyone should be pitied, it should be her looking at us and feeling pity that we are so overwhelmed and so stressed and so hurt all the time and so worried," she explained. "If we could be more like her, the world would truly be a more harmonious and beautiful place."

Raising awareness, paging country singer Chris Stapleton

Given that peroxisomal disorder is rare, Toni said that she and her family are on a mission to raise awareness. 

The Global Foundation for Peroxisomal Disorders has been able to connect them with other families. 

Toni and her family also plan to hold a fundraising benefit over the summer called Harmony in the Mountains to raise money for research into the disease. 

Chris Stapleton performs onstage during the 57th Annual CMA Awards at Bridgestone Arena on November 08, 2023 in Nashville, Tennessee. (Photo by Astrida Valigorsky/WireImage)

A concert will be held in Knott County, Kentucky. The family even made a video, inviting country singer Chris Stapleton to the concert. Stapleton is a Kentucky native. 

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While the family hopes Harmony will see her second birthday, they understand it's more about enjoying the time they currently have with her. 

"The one thing Harmony has taught our family and many people that love her, is that the most important time is right now," Toni added. 

This story was reported from Los Angeles.