AZ: "Miracle" Recovery For Tucson Girl Battling Rare Brain Syndrome

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Ron Strider

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A Tucson child is getting remarkable results, from a revolutionary treatment in Phoenix.

We first told you about Annalise Lujan back in May. She had a rare brain syndrome that was killing her, until doctors at Phoenix Children's Hospital tried something out of the box. Now, Annalise is back home with family, right where she belongs.

"It's just like a miracle I made it," Annalise Lujan, 12, told Kristi's Kids.

Annalise and her parents, Paul and Maryann, are forever changed by the last few months.

"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 told Kristi's Kids, when we first spoke with her at the hospital in May.

It was April 2 when the first signs of trouble began to emerge. Annalise was competing in gymnastics, when her body started breaking down. Within days, she was experiencing uncontrollable seizures, from a little-known disorder called F.I.R.E.S.

"They say one in 1,000,000 child will get this syndrome, and that's how rare it is," Paul told Kristi's Kids. "We had no idea that our whole world would be 180'ed, and turned around in such devastation, such heartache, such confusion," he said.

Annalise was airlifted to Phoenix Children's Hospital, and treated with a marijuana-derived oil called CBD. Unlike THC, he oil does not create a "high." Within 48-hours of getting CBS, Maryann said the seizures all but stopped.

"CBD oil saved her life," Maryann told Kristi's Kids.

Annalise's parents tell Kristi's Kids, their daughter received world-class care at Phoenix Children's.

"They really helped us. They had a lot of positive thoughts and energy. They were all excited to help Annalise," Maryann said.

When doctors let Annalise out of her drug-induced coma, she was herself again. She tells Kristi's Kids, the first thing she wanted was a root beer float.

Annalise is still a gymnast, and a philanthropist. Since a very young age, she has been collecting pop-tabs, for the Ronald McDonald House, and donating hair to "Locks of love." Though mostly, she is passionate about helping kids of all ages, who are facing times of struggle.

"It makes me feel happy that if you help someone out, then you're helping yourself too," Annalise told Kristi's Kids. "We're all special, in different ways," she added.

Maryann and Paul are hoping that Annalise's case, the first of its kind at Phoenix Children's, will help other kids fight FIRES. In the meantime, Annalise has therapy appointments, and the family is getting used to the their new normal. Annalise was even able to get her root beer float.

Annalise and her family know the road ahead will be difficult, but this brave, strong little girl knows, that when there's will, there's a way.

"If you want anything in the world, just go for it and do your best," Annalise said.

The Lujan family wants to thank the entire community for their prayers and support over the past several months. If you would like to help, Annalise has a GoFund me account to help with all her medical and rehab bills. The family is also looking into the possibility of getting Annalise a trained seizure dog.



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Full Article: "Miracle" recovery for Tucson girl battling rare brain syndrome - KVOA | KVOA.com | Tucson, Arizona
Author: Kristi Tedesco and Paul Birmingham
Contact: Contact Us - KVOA | KVOA.com | Tucson, Arizona
Photo Credit: Maryann Estrada-Lujan
Website: Home - KVOA | KVOA.com | Tucson, Arizona