A Central Texas 6-year-old who had flu and strep throat in February died a few weeks after due to a rare immune system disorder.
Madelynn Ciara Mata was being treated at the hospital for both infections when doctors discovered she had a rare disease called hemophagocytic lymphohistiocytosis.
The life-threatening condition causes certain components of the immune system to be more active than normal, which damages internal organs.
The Waco girl died two weeks after her diagnosis, leaving her family devastated.
"I was hopeful that we are going to beat this. That Madelynn is strong. Madelynn can fight this. It didn't happen that way. Her lungs couldn't heal,” Madelynn’s mother, Jessica, said.
Baylor Scott & White McClinton Cancer Center Medical Oncologist Dr. Tara Barnett said there is usually a delay in detection of the rare condition.
Barnett was not Madelynn’s doctor but she is familiar with the disease because she treats adults with HLH.
"Identifying it early and getting it treated early is very important in success for treatment because the symptoms are vague and it often looks like a garden-variety infection or sepsis makes it very difficult,” Dr. Barnett said.
Madelynn was diagnosed with strep throat on February 2nd. However, her parents said they noticed something unusual.
"Her breathing and her heart rate was just abnormal. It was just scary so we took her to the emergency room here [in Waco]” Jessica said.
The Rapoport Academy student was transferred to McLane Children’s Medical Center in Temple where doctors diagnosed her with the flu. Days later, after she had a spinal tap, doctors determined the 6-year-old had HLH.
During her stay at the hospital, the mother of four recalls Madelynn experiencing a rash that went from her cheek to her stomach.
Madelynn had two rounds of chemotherapy at the hospital, which Jessica said was working.
However, on Feb. 23, doctors told the 32-year-old, her daughter only had 24 hours left so she decided to do what she loved the most.
“I played her praised music and I started singing to her. ‘Baby is going to be OK. No matter what happens. It’s going to be OK,'” Jessica said.
She called family and friends for them to say their final goodbyes.
“After everybody came in, and after everybody had seen her and walked out is when Madelynn's heart stopped,” Jessica said.
Madelynn’s mother and her family cherish the moments she shared with her.
“The six years we had her were a blessing,” Jessica said. “She was such a joy. She brought so much light to our family.”
The family of the former Rapoport Academy student created a Facebook page called Mighty Maddie for HLH awareness to bring attention to the disease and raise funds for research to prevent this from happening to another family.
“If we can turn something so tragic and turn it into something positive and helping raising awareness, to help somebody else, to help somebody else’s life. That’s what we want to do,” Jessica said.
The Mata family doesn’t know if the disease is genetic or if it is secondary.
“It could’ve been something that she had that we have never seen any other signs to lead us to do further testing but it could’ve been how bad the flu was this season,” Jessica said.
Some symptoms associated with HLH include rashes, persistent fevers, respiratory issues and anemia.
“The general scenario is back and forth to the doctor with high fevers without an underlying cause. It may be something for people to watch out for,” Dr. Barnett said.
Cincinnati Children’s Hospital Medical Center Professor of Pediatrics Dr. Michael Jordan said hundreds of children in the U.S. are diagnosed with HLH every year.
“Many of these patients actually never received a diagnosis and they died from the disease. It was only perhaps on an autopsy or the development of the same disease in a sibling that it was recognized the patient had this problem,” Dr. Jordan said.
Jordan who works in the division of Immunobiology and Bone Marrow Transplant and Immune Deficiency is also researching to find a cure for HLH.
He is conducting clinical trials at the hospital HLH Center of Excellence on patients with HLH to come up with better targeted therapies.
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