Infant with rare disease celebrates 1st birthday: ‘She brings harmony to everybody’
KNOTT COUNTY, Ky. (WYMT/Gray News) - A Kentucky family celebrated a major milestone as their youngest child, who was diagnosed with a rare disease shortly after birth, turned 1 year old.
Nearly every parent has said their child is a miracle. Toni and Leon Mullins said they have five. Their youngest miracle, Harmony, turned 1. For some, this may not seem like a big deal, but for little Harmony, it was.
“We celebrated all of our kids’ first birthdays, but this one is extra special,” Toni Mullins told WYMT.
Shortly after Harmony was born, she received the diagnosis of a peroxisomal disorder, a very rare disease. Peroxisomal disorders are genetic disorders that cause deafness, blindness, global developmental delays, adrenal insufficiency, neurological issues and feeding issues. They are almost always terminal in childhood.
“She has a disease called Zellweger spectrum disorder, and she has the more severe part of the disease, which is called Zellweger syndrome,” Toni Mullins said.
It’s estimated that only 80 babies are born with Zellweger spectrum disorder each year in the United States, according to the Health Resources and Services Administration.
“When she was diagnosed, one of the first things they told us was that most babies pass before their first birthday,” Harmony’s parents said. “Originally, at first, it was a pretty tough pill to swallow. I mean, no parent wants that news.”
Although they had little information and no cure, the parents said they made the decision to continue living in harmony.
“When you’re faced with this situation, you really learn then to put your trust in God,” Leon Mullins said.
Harmony’s parents both added they continue to see miracles and will keep working to raise awareness for the disease.
Thankfully, the family was able to call on The Global Foundation for Peroxisomal Disorders to help connect them with other families navigating this rare disease and with educational and support resources specifically designed for families like theirs.
“She is just such an important part of our family,” Harmony’s parents said. “If anyone has truly lived up to that name, it’s her because no matter what situation or where you’re at or who’s around, she brings ‘harmony’ to everybody with happiness.”
The family is currently planning a special benefit concert called Harmony in the Mountains to raising money for more research into the disease.
The concert will be held in Knott County to raise awareness of peroxisomal disorders and raise funds to support the incredible work being done globally by the The Global Foundation for Peroxisomal Disorders. It will feature local musicians and bands, artists, vendors and performers. All ages are welcome to join for music, games, food and community.
Harmony’s sisters and brother also made a special video to invite country artist Chris Stapleton to the concert. They asked Stapleton and his wife to come back home for the night. To watch the video, click here.
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