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.
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.
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 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.”