Nine-year-old Lyla McCarty was baking a cake when she started screaming in pain and fell off her chair at the kitchen table.
Her parents, Heather and Derek, couldn't figure out what was wrong. They didn't see any injury on her left foot or leg, where she said it hurt.
The next morning, Heather drove her daughter to the pediatrician and carried her inside. When Lyla's X-rays came back normal, they took her to St. Louis Children's Hospital. The doctors ran more tests and sent her home with a walker.
Before this mysterious pain, Lyla, who lives in Arnold, Missouri, loved to play soccer and volleyball and run around with her friends in fourth grade. Now, she was hiding behind chairs in her bedroom, crying inconsolably and refusing to go to school.
Additional tests came back clear. Nearly a month had passed without any answers. Then, Lyla's foot started turning purplish-red and was cold to the touch.
That's when they got a diagnosis: complex regional pain syndrome (CRPS), a rare type of chronic pain that often affects an arm or leg. Her parents had never heard of it. When Heather Googled it, she saw it referred to as the "suicide disease" because the extreme level of pain can lead to an elevated risk of suicide.
"My heart dropped," she said.
The McGill Pain Index rates CRPS as one of the most severe pain conditions, ranking more painful than childbirth, amputation and cancer pain. There's not a lot known about what causes it or how bad it might get. The McCartys took Lyla to pain management specialists; they tried medications, physical therapy and desensitization therapy. She was missing lots of days at school and started having panic attacks when she would attend.
In the mornings, she begged her mom to take her to the hospital instead of school.
Their doctors referred her to Cincinnati Children's Hospital, which has one of the country's only comprehensive inpatient rehabilitation programs for children with severe, chronic pain. The wait list for an initial consultation was months long.
Heather started calling every week in case there was a cancellation, finally getting an appointment on what normally would have been Lyla's first day of fifth grade. Lyla met with a team of doctors, including a pain psychologist who interviewed her with her mom in the room.
"Have you ever had thoughts of not wanting to be alive because of this?" the psychologist asked.
"Yes," Lyla said. "A couple of days ago."
Heather's eyes filled with tears.
The specialists recommended that they admit Lyla for the three-week intensive in-patient program. Heather's insurance company, UnitedHealthcare, denied it immediately. The McCartys asked for an expedited appeal, given the precipitous decline in their daughter's mental health.
UnitedHealthcare denied the appeal.
The McCartys then asked for a peer-to-peer consult, in which the specialist at Cincinnati Children's could directly make the case for their daughter.
The McCartys shared the denial letter in which UnitedHealthcare states that the treatment for Lyla is "not medically necessary." They are still waiting for additional documents to explain that decision.
I asked Lyla what it feels like when the pain flares up in her foot.
"It's like knives or little red ants stinging me," she said. "Sometimes it lasts for a couple minutes. Sometimes it can last for hours."
Her father, Derek, broke down crying when trying to describe how helpless he feels: "She's in a place where it's so excruciating, and we can't even touch her or comfort her."
The McCartys asked the hospital about paying out-of-pocket, and learned that two weeks of in-patient treatment would be around $67,000. Their friends, family and co-workers began raising funds.
Before she got sick, Lyla would set the dinner table and leave notes for her parents and sister under the napkins: "I love you the most" or "You're the best sissy ever."
Now, she can't always make it through the meal.
"Sometimes I'll make a fort in my room and just lay in there," she said.
Imagine two working parents, with health insurance, having to ask for donations because their child got struck with chronic pain that is ruining her life. Imagine seeing your child suffering so much and being helpless to stop it.
Then, imagine explaining to your child why an insurance gatekeeper can overrule the doctors trying to help her.
Sometimes, the pain is too much.