The holidays are meant to be spent at home with family, building memories and traditions. For many of our families, the holidays are spent in the hospital….. families like the Stewarts and their daughter Maddie.

Maddie’s journey began in 2011. Her mother, Sara, quit her job to stay at home to take care of their new baby. Sara could tell something wasn’t quite right with her daughter. Being with Maddie all day allowed Sara to track Maddie’s changes, but she couldn’t put her finger on what was wrong.  “On a whim, Mike and I took her to Children’s Hospital in Pittsburgh,” Sara remembered. “That’s when chaos started.”

Maddie would be taken to the hospital many times. Six months later, her physician diagnosed Maddie with mitochondrial disease.  “The unknown was terrible,” said Sara.  “The type of diagnosis was terrifying to us – Pearson’s Syndrome.” It wasn’t the diagnosis the Stewarts wanted to hear.  Despite the prognosis, Sara and her husband, Mike, put aside their fears and focused all their energy on Maddie.  “As a parent, you don’t prepare for that,” Sara said.  “You think you’re going to be shining at a PTA meeting, not fighting for your kid’s life”.

Maddie is now 9 years old. She loves going to school, coloring, and having fun in her yard with her two little sisters. Sara views life through Maddie’s eyes.   “We take her to gymnastics even though she is way behind the other girls,” Sara said.  She remembers the first night at gymnastics, Maddie could barely do a cartwheel.  But after some practice, Maddie managed to cartwheel on her own.  “Granted, her cartwheel didn’t look anywhere near the others, but her feet got off the ground without any help and I think we celebrated for two days!”