Kessler Schutt isn't a typical 11-year-old girl. She is a self-taught artist who paints.
Sometimes it's fruits and vegetables.
"Veggies and fruit matter to me," she said, "So I wanted to honor them."
Other times it's an abstract piece. One she likes to show is a canvas with hues of blue and purple with the word "Live" on one side.
"It's inspired to, like, live how you want to live. And don't let anything stop you because you only live once," she said, describing the picture.
She has dozens of them, always with a message.
Schutt paints and speaks with the wisdom of someone much older. She is the oldest of Queen Creek residents Doug and Stacey Schutt's three children and they say her maturity is a trait she has always exhibited.
"Even as a baby, even as a toddler. And it carries to today, that just huge personality," her mom Stacey said.
But while her mind is maturing rapidly, Schutt's body is not.
By the time she turned 8 years old, her slow growth became more pronounced.
"That's when she had completely fallen off the growth chart," said Stacey.
Bone scans showed Schutt had the bones of a 6-year-old.
At the time, she was diagnosed as a late bloomer and the family was told to closely monitor her size.
"They call it short stature. She (the doctor) thought that was what was going to happen with her. Just she would be a little bit later to grow than her peers, but she would catch up eventually," Stacey recalled.
But at age 11, it seemed she had stopped growing completely. They went to see a different specialist.
More testing found Schutt had a cyst on her pituitary gland in her brain and she wasn't producing enough Human Growth Hormone (HGH).
For her family, finally having an answer was a relief.
"I mean, we were all very happy that we finally had a reason and that there was a treatment for it," Stacey said.
HGH controls organ and tissue growth, it also helps regulate metabolism and blood pressure.
"It's not just about making her taller," said Stacey, who is also a nurse. "It helps her joints grow, it helps her tissues grow, it helps her bones grow her organs, her cells. It's a necessary hormone."
Treatment is considered easy and effective: 1 shot of HGH every day.
Schutt will likely have to take it until she turns 19 but getting the medication she needs was much harder than her family anticipated.
"She was at school and was so uncomfortable that she had to call me and say my arm is on fire. It's red, it's raised, and it's so itchy," Stacey said.
Two weeks into her daily shots, it became apparent that Schutt was allergic and the response was getting worse.
Their doctor believed preservatives in the medicine were the cause and submitted for a preservative-free brand.
That request was denied by their insurance.
"So our next step was to appeal it," Stacey said.
This time the doctor wrote a letter explaining Schutt's reaction and why they needed the preservative-free version to be covered.
Denied again.
"They said the only drug they would cover would be the one that she already received, and that she had the allergic reaction to. So we had no other alternatives, except to pay for it out of pocket," Stacey said.
At a cost of nearly $16,000 for an 84-day supply.
Stacey and Doug said they spent hours every day trying to reach someone to explain their situation but could never get past frontline call center workers.
"They don't even give the last names for the appeal coordinators," Doug said. "We don't even know if these are real people that are actually looking at these appeals."
"To them, our daughter is just this piece of paper. You know, they don't know her. They don't know her story," Stacey said.
Erin Bradshaw is with Patient Advocate Foundation, a non-profit that helps people with chronic or life-threatening illnesses access treatment. The organization was not involved in the Schutt family's case but told ABC15 that a case like theirs should not have been as difficult as it was to fight.
"Some things are hard to appeal. And other things like this shouldn't really be so challenging," she said.
But if it is, she said patients have the right to fight it.
"The Affordable Care Act instituted a standard protocol around how appeals should be," she said.
Typically, Bradshaw said patients get three appeals with the final being an independent review by a third party whose decision is binding.
But before getting to that last appeal, Bradshaw recommends involving your state's insurance regulator and perhaps more importantly your employer.
"Because they are your benefit administrator," she said. "I think it's important that they know that there are challenges that you're facing, accessing your benefits."
And that's exactly what the Schutts did.
Doug's company went to the insurance company's corporate representative on their behalf.
An exception was approved and Schutt should be covered through the end of the year.
"We'll fight. We'll keep fighting," Stacey said. "We're her parents, our job is to protect her and take care of her. And we'll do whatever we can."
