Story, Patient

‘Grateful to be Alive’: Sara’s Fight for Her Life

June 5, 2019

Sara was diagnosed with a rare autoimmune disorder and spent 35 days in the Children's Hospital Colorado PICU, fighting for her life. Sara faced a long road to recovery, but she says her challenges have given her a renewed sense of gratitude for life.

Sara had just turned 14 when she first noticed the blood blisters. They appeared overnight in a scattered pattern across her forehead. Sara didn’t think much of it, but a few weeks later, she started experiencing painful earaches, followed by sore joints and crushing fatigue. Not long after, she started coughing up blood.

“That’s when we knew something serious was going on,” Sara said.

Sara was referred to Children’s Hospital Colorado. Within hours of arriving, she was admitted to the Pediatric Intensive Care Unit.

“By then, her lungs were hemorrhaging,” said Sara’s mother, Theresa.    

A blood test revealed that Sara had a rare autoimmune disorder known as granulomatosis with polyangiitis. It can cause severe blood vessel inflammation throughout the body. In Sara’s case, her immune system was attacking her own lungs, causing severe damage.

“She had to be intubated and put on a ventilator right away,” Theresa recalled. “They were doing everything they could, but her lungs kept bleeding.” 

Doctors did a plasma exchange to try to remove the harmful antibodies, and they connected her to a bypass machine to support her fragile lungs.

Heavily sedated and struggling to breathe, Sara was fighting for her life. 

Going Home

Even during her hardest days, Sara’s care team still found a way to make her smile. Sara remembers one time waking up in the middle of the night, unable to sleep. Her favorite nurse, Andrea, came into the room.

“She said, ‘We need to do some exercises to make you tired,’” Sara recalled. “So she got me out of the bed, and we did the YMCA dance. She always found a way to make me laugh.”

With expert medical care and support from her family, Sara slowly got stronger. A month after being admitted to the hospital, her ventilator was removed, and she started breathing independently. Within days, Sara was able to return home, but her battle was far from over.

Uphill Battle

Sara was finally home, but her time in the hospital had left her very weak. At first, she still had a feeding tube, and she had to relearn basic tasks – things like walking and writing.

“The hardest part was accepting that I couldn’t do all the things I used to do,” Sara said. “On the really difficult days, I just tried to take it one hour at a time.”

Sara never stopped fighting, and she continued to get stronger. Two years later, she still undergoes infusion treatments at Children’s Colorado. She also requires surgery about once a year to clear out scar tissue from her lungs. There is currently no cure for Sara’s condition, so she will likely have to manage it for the rest of her life.

“Being a teenager is hard in itself, but having this disease makes it that much harder,” she said. “A lot of people see me for my sickness instead of who I really am.” 

Nevertheless, Sara says her experience has given her a renewed sense of purpose and gratitude for life. Now 16, Sara is an avid runner who finds joy her in family, her dogs and in helping others. She dreams of someday becoming an oncology doctor.

“I want to help people and give back the same way my nurses and doctors helped me,” Sara said.

As a Patient Ambassador for Children’s Colorado, Sara is raising money for the hospital that she says saved her life.

“I’ve grown so much as a person since getting sick, and I feel grateful to be alive,” she said. “I’ve learned that you have to take any situation you face and make the best of it.”

World-class care

Children’s Hospital Colorado provides expert care to every child who needs us. It’s the only hospital in the region dedicated exclusively to children, and its health outcomes are among the best in the nation.

“I’ve always known about Children’s Hospital Colorado, but we never needed it before,” said Sara’s mother, Theresa. “Now I realize how important it is to have a hospital that really knows how to take care of kids with complex conditions.”

Children’s Colorado is also home to one of the country’s largest Multidisciplinary Clinics. Medical teams work together across specialty areas, providing coordinated care that recognizes each patient’s unique needs.

“Sara had a whole team of doctors from rheumatology, pulmonology and other areas,” Theresa said. “They all worked together, and they came up with the best plan.”

Thanks to donors, Children’s Colorado provides outstanding clinical care that enables kids to thrive and reach their fullest potential.