EXCLUSIVE: Decatur girl with rare disease says moving to Alabama saved her life

Updated: Sep. 2, 2019 at 8:26 PM CDT
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DECATUR, Ala. (WAFF) - Juliana Goode was a typical 12-year-old girl.

She was an active athlete who loved playing soccer. For the past five years, she’s suffered from rapid weight gain and constant fatigue.

The worrisome symptoms started with aches all over her body.

“I’m having these really bad headaches, and I’m sleepy all the time. I don’t feel good so they took me to the doctor," Juliana said.

Growing up in California, her parents thought they’d have no problem figuring out what was wrong with their daughter.

They took her to doctors, specialists and even nutritionists.

“We were referred to a neurologist, they said oh it’s just let’s give you medication for it. So, they did go away, but as the disease progressed she started gaining weight, high cholesterol and still no answers," Kennie Goode, Juliana’s mother, said.

The Goode family searched for answers for years after Juliana continued to gain weight.

It affected everything in her life. She couldn’t play sports and she couldn’t go to school.

Her mom says doctors even misdiagnosed her.

“Within a year from moving here, we have the answers, we have the treatment,” Goode said.

The Goodes moved to Alabama in September of 2018. Kennie says Alabama saved Juliana’s life.

“It turns out she had a tumor in the pituitary gland, and they diagnosed it finally as Cushing’s disease,” Kennie explained.

The Goodes were referred to the Children’s Hospital of Alabama in Birmingham. The doctors there believed she had an extremely rare disease, and then sent Juliana to the National Institute of Health (NIH) in Maryland.

She’s already been to Maryland once for several series of tests.

“It was kind of like irritating, like ugh, really I have to go to a new doctor and do it all over again. I still don’t know what I have," Juliana said.

Juliana says she tried everything. She went on diets, she exercised, she changed her whole lifestyle. Nothing worked.

It was the doctors at the Children’s Hospital in Birmingham who were the first to have any sort explanation.

“I just want to tell parents to never give up on your kids,” Kennie said.

“I knew deep down that something was wrong with Juliana, but I didn’t stop looking. After five years, we finally have an answer and a cure," she continued.

In less than two weeks, Juliana will have surgery to remove the tumor from her pituitary gland.

Studies show, most Cushing’s patients return back to a normal lifestyle post-surgery.

“The first thing I probably want to do is maybe once I get a little better, I’m gonna play soccer again! I’m gonna sign up and play the sport that I love,” Juliana said.

James Goode, Juliana’s father, says NIH is the top research facility in the world for Cushing’s disease.

Goode says the doctors hope treating Juliana will help advance their research and find cures in the future.

If you’d like to follow along with Juliana’s journey or contribute, click here.

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