Today our Rare Girl celebrates Rare Disease Day. 80% of Rare Diseases are genetically based and only 5% have treatments. The zebra is the official symbol of rare diseases because of it’s black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct!

Some fun facts about our family and our Rare Girl:

  • Gwen’s parents are high school sweethearts who survived long distance through college. Statistically, 2 in 100 high school sweethearts get married.
  • We are a couple who struggled with infertility…1 in 10 chance
  • Prior to Gwen, we suffered an ectopic pregnancy…1 in 1,000 chance
  • Erin’s body didn’t respond to the typical treatment and she was taken into semi emergency surgery which resulted in losing her right Fallopian tube…rare outcome.
  • While the loss of our first baby was hard, it gave us an extremely rare rainbow…Gwendolyn!
  • At 5 months old, Gwen was diagnosed with a “rare and complex” neurological disorder.
  • We underestimated how “rare” her disorder would be! To date, Gwen has been studied by St. Louis Childrens Hospital, Washington University for trial studies, Vanderbilt University, Baylor University, Kennedy Krieger, Mayo Clinic, and the Undiagnosed Disease Network.
  • Gwen remains “undiagnosed” at this time..essentially her disease is so rare that it has not been discovered yet.
  • If a researcher ever determines her rare diagnosis, she will most likely be the first child in the WORLD diagnosed with that disease/syndrome.

Today, we celebrate our rare girl and all the other rare, strong, and courageous superheroes!!

Published On: February 1, 2023Categories: News