“But Maya would be crying 24/7,” Jack, 61, says. “We knew she wasn’t faking.”
Her mother Beata 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 theCleveland 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. CRPS “is an abnormal function of the sympathetic nervous system,” he says. Over time, “your senses get ramped up so if a drop of water touches your skin, it can feel like somebody’s jabbing you with a knife.”
Gesi Schilling
“I felt amazing,” Maya recalls. Afterward, she continued to receive ketamine infusions to control her flare-ups due to CRPS, a disorder that can be managed but not cured, Dr. Kirkpatrick says.
Maya and her parents Beata and Jack with Dr. Anthony Kirkpatrick in 2015.Netflix
Netflix
But, 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. Beata — who was trained as a registered nurse — pleaded with doctors to administer a high dose of ketamine, the one treatment they believed was effective for their daughter’s pain.
A court-ordered psychological evaluation eventually determined Beata 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.
“One day I was in the ICU, and my mom kissed me on the forehead and was like, ‘I love you. I’ll see you tomorrow.’ I never saw her again,” Maya recalls. “I was medically kidnapped. I tried being hopeful, but there was a point where I thought, ‘I’m never getting out of this place.’”
Without any contact with her daughter, Beata “was deteriorating,” Jack says. “She would stay up and research and hardly eat.” And when a judge in a hearing denied Beata the chance to give her daughter a hug, it “destroyed her,” Jack says. Beata was inconsolable afterward.
“This little girl was already hurting, and now I had to tell her that her mother’s passed,” Jack says. “It was horrible.”
Maya Kowalski suffering from CRPS symptoms in 2015.Beata Kowalski
Beata Kowalski
Five days later Maya was released into her dad’s custody and returned home to Venice, Florida. While there, she struggled with both the pain of her condition and the grief from her mother’s death. Jack says her health had also regressed while in the hospital due 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. “We worked with her slowly: water therapy, things like that,” Jack tells PEOPLE. “But it was horrible — after losing my wife, I thought my daughter was next.” It was a year and a half until she was able to walk unassisted again.
Today, Maya has full use of her arms and legs, but some nights the pain still causes her to cry out. “I do my best to push through,” she says. “I’ve already missed a lot, so I want to make the most of life now.”
Jack Kowalski with son Kyle and Maya, photographed at home in Florida for People in May.Gesi Schilling
The family has since filed a lawsuit against the hospital, which is scheduled for trial in September — more than six years after Beata’s death. “For us as a family to move on, we need to fulfill my mom’s wish and fight,” Maya says. “I want justice for my mom.”
A spokesperson from Johns Hopkins All Children’s Hospital would not comment directly on Maya’s case but shared a statement to PEOPLE that says in part: “Our first responsibility is always to the child brought to us for care, and we are legally obligated to notify the Department of Children and Families (DCF) when we detect signs of possible abuse or neglect. It is DCF that investigates the situation and makes the ultimate decision about what course of action is in the best interest of the child.”
Now, the Kowalskis will tell their story in a new Netflix documentary,Take Care of Maya,premiering at the Tribeca Festival and available to stream everywhere June 19.
For the full story on Maya Kowalski, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribehere.
source: people.com
