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Tucson girl battling rare brain syndrome - KVOA | KVOA.com | Tucson, Arizona

Tucson girl battling rare brain syndrome

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TUCSON (KVOA) -- A young Tucson girl is in a Phoenix hospital, suffering from an extremely rare brain syndrome.  Now, her family is finding new hope, through an equally rare and revolutionary treatment.

“One day, she was just a healthy young lady, going to school, participating in her community and her gymnastics, and the next day - fighting for her life,” Maryann Lujan, Annalise Lujan’s mom, told Kristi’s Kids.

Maryann, and her husband, Paul, have been spending their days and nights at Phoenix Children’s Hospital beside Annalise’s bedside.

“We had no idea that our whole world would be 180-degrees turned around in such devastation, such heartache, such confusion,” Paul Lujan told Kristi’s Kids.

It was April 2nd, when Annalise, 12, had been competing in a Tucson gymnastics competition. That’s when this little girl, who until now, had been so healthy, began to break-down.

“By her fourth event, she just couldn't move. She couldn't walk. She just was exhausted, tired, not feeling well,” Maryann said.

Annalise's parents took her to Banner UMC where doctors sent her home, thinking she had a stomach virus. The next night, Annalise had her first seizure. She went back to UMC, and was sent home again. The next morning brought more seizures. This time, she was admitted to intensive care.

“She was put on a ventilator, and put into a medical coma, and, we haven't talked to her since,” said Maryann.

Eighteen days later, Annalise was airlifted to Phoenix Children’s Hospital, where doctors quickly determined that her seizures were due to an extremely rare syndrome called FIRES, which stands for Febrile Infection-Related Epilepsy Syndrome.

“They say one in one-million children will get this syndrome, and that's how rare it is,” Paul Lujan told Kristi’s Kids.

 At Phoenix Children’s Hospital, Annalise's doctor took extraordinary measures, and began treating her with CBD oil.

“CBD oil saved her life,” Maryann said.

CBD, or cannabidiol, is derived from marijuana, but doesn't produce the “high” that comes from THC.  

Maryann told Kristi’s Kids, in less than 48-hours after her first treatment, Annalise's seizures all but stopped.

“She opened her eyes, and she was scared. She was afraid. She cried. And, I whispered to her that she was very strong, she's beautiful, and she's strong, and she needed to keep breathing, and she did,” Maryann said.

Annalise loves gymnastics, and giving back to her community. For years, she has been collecting pop-tabs for the Ronald McDonald House and she donates her long, flowing hair to Locks of Love.

“If she sees someone in need, she'll, she'll put her heart into it,” Paul told Kristi’s Kids.

In order to treat Annalise with CBD oil, her doctor had to get rapid approval from the FDA and DEA. Her parents are now hoping that Annalise's case-study, the first of its kind at Phoenix Children's Hospital, can help other kids who are fighting FIRES. They’re hopeful that through the information gained in Annalise case that no other family will have to experience this living nightmare.

“We have a long recovery ahead of us. But, we're definitely on the right track now,” Maryann told Kristi’s Kids.

Annalise recently came out of her coma, but remains in the hospital.

A GoFundMe account has been set-up to help assist Annalise's family with medical and therapy expenses. You can contribute, by clicking on the links.

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