Maya Kowalski and her father, Jack Kowalski, have shared their story with People magazine about the severe pain caused by Maya’s rare neurological disorder and how accusations of Munchausen syndrome by proxy (MSP) led to her mother Beta Kowalski’s suicide.

In 2015, Maya was nine years old when she began experiencing asthma attacks and headaches.

Lesions had formed on her legs and arms, and her feet began cramping and curling.

Many doctors were puzzled by her symptoms, with at least one suggesting it was all in her head.

Maya’s mother, Beta, was then told about complex regional pain syndrome (CRPS), a rare neurological condition that can cause constant or intermittent pain in the extremities, a burning sensation, and extreme sensitivity to touch.

According to the Cleveland Clinic, the condition can make even routine procedures, like taking a blood pressure reading, excruciating.

The family then turned to Dr. Anthony Kirkpatrick, an anesthesiologist and pharmacologist in Tampa who specializes in CRPS, and he officially diagnosed Maya with the condition.

Kirkpatrick started treating Maya with infusions of the anesthetic drug ketamine, but Maya’s symptoms were persistent, so he suggested a more drastic treatment, a five-day ketamine coma in which the nervous system, flooded with a high dose of the drug, is essentially reset.

The procedure is still experimental and not approved by the FDA, so the family needed to travel to Mexico to have it done.

Although risky, Jack says it was the only hope they had, and the treatment, which Maya underwent in November 2015, ultimately helped her debilitating symptoms.

However, in October 2016, Maya was rushed to the emergency room at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, with crippling stomach pain.

Her parents explained to the medical team that Maya had CRPS.

Beta pleaded with doctors to administer a high dose of ketamine, the one treatment they believed was effective for their daughter’s pain.

That request raised concerns among hospital staff, who alerted Child Protective Services.

An investigative team later accused Beta of child abuse due to Munchausen syndrome by proxy, a mental disorder in which a caretaker of a child either makes up fake symptoms or causes real symptoms to make it appear that the child is injured or ill. A court-ordered psychological evaluation eventually determined Beta did not have the mental illness, but less than a week after Maya checked into Johns Hopkins, she was placed in state custody and remained in the hospital away from her family for more than three months.

Without any contact with her daughter, Beta was deteriorating, according to Jack.

She would stay up and research and hardly eat.

And when a judge in a hearing denied Beta the chance to give her daughter a hug, it destroyed her.

After more than 87 days without her daughter, Beta died by suicide in January of 2017, at the age of 43.

Maya struggled with both the pain of her condition and the grief from her mother’s death while at home in Venice, Florida.

Jack says her health had also regressed while in the hospital due to not receiving ketamine treatments.

A court order prevented her from continuing ketamine after her release.

Instead, the family had to turn to other therapies, and as a result, her recovery, they say, was slower and more painful than it needed to be.

Today, Maya has full use of her arms and legs, but some nights the pain still causes her to cry out.

The family has since filed a lawsuit against the hospital, which is scheduled for trial in September, more than six years after Beta’s death.

A spokesperson from Johns Hopkins All Children’s Hospital would not comment directly on Maya’s case but shared a statement with People magazine that says their first responsibility is always to the child brought to them for care, and they are legally obligated to notify the Department of Children and Families (DCF) when they detect signs of possible abuse or neglect.

Maya hopes to find justice for her mother and move on from the tragedy.

The Kowalskis will share their story in a new Netflix documentary, Take Care of Maya, premiering at the Tribeca Festival and available to stream everywhere June 19.