5-year-old with rare disease in the fight for her life
SALT LAKE CITY, Utah – Nothing worked to ease the pain. Bonnie Mattix said her daughter complained of headaches for two days before the family realized the severity of the situation and took her to the emergency room.
“She kept holding her head, complaining that her head was hurting,” Mattix said. “She was crying she didn’t want to go to Primary, she didn’t want to go to class.”
Doctors discovered 5-year-old Aria had swelling in her brain, suffered partial seizures and had had a stroke. She was diagnosed with Mitochondrial Encephalopathy, Lactic acidosis, and Stroke syndrome or MELAS. Every 1 in 10,000 people are diagnosed with a mitochondrial disease. With MELAS, it is about 1 in 1,000,000.
“We were devastated. Apparently this is a genetic disease passed down from mother to child,” Mattix said. “Right now her current life expectancy is 5 years with MELAS.”
The family was granted a referral to a mitochondrial specialist in New Orleans and is planning to go ahead with the out-of-state treatment to prolong Aria’s life. They said their insurance plan will not cover out-of-state bills. They said there are no medical grants that specifically cover MELAS, and there are no charities or organizations for their daughter’s disease.
“The cost of her treatment falls solely on our shoulders,” Mattix said. “We are trying to raise money to get her the treatment and to help pay for the cost of living while we are down there.”
Aria plans to start treatment in Louisiana in September. The family has set up a gofundme account to help raise the funds needed. They have also set up a Facebook account to log Aria’s journey and to also raise awareness for the rare disease.
Mattix said she knows this is not a cute but wants to give her daughter the fighting chance she deserves.
“We want her to be a happy as normal as can be 5-year-old that lives a happy normal life, as much as she can,” Mattix said.