Elizabeth Piro is a courageous twelve year old girl who was recently diagnosed with Kearns Sayre Syndrome. Elizabeth, born on October 23, 1998 to Frank and Paula Piro, was a healthy baby with no complications who hit all of her major milestones. At the age of three she had an adenoidectomy and there was a complication with the anesthesia she was given for the procedure. Ever since then, her health just hasn’t been right. At her four-year check-up she was noted to have been falling off of the growth chart. Over the years, more health problems started to occur; weight-loss, ptosis, pigmentary retinopathy, learning disabilities, endocrine problems, and other complications. At the age of seven when her weight became dangerously low, she received a GI tube for supplemental feedings.
After eight years of going to specialty hospitals and physicians, exhausting every avenue, Elizabeth was accepted into the Undiagnosed Disease Program at the National Institute of Health in Bethesda, Maryland. At NIH a team of 52 specialists worked on Elizabeth’s case running numerous tests and examinations, and finally came to the conclusion that Elizabeth had Kearns Sayre Syndrome.
Elizabeth has always stayed strong and brave throughout all of her testing and procedures. She is a bright, energetic, caring, fun-loving girl. Though she continues to face daily challenges, Elizabeth is a typical energetic twelve year old with many friends and a very supportive family. Elizabeth will face many challenges through the upcoming years, as this is a slow-progressing disease, we hope that researchers will be able to develop a cure for KSS.
The Elizabeth Piro Research Fund has been established to honor Elizabeth and her ongoing fight with KSS. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Elizabeth’s name. Please donate to help Elizabeth and others who are battling KSS.