Author: Christine McCollum DavisPatient or Advocate: Tala McCollum DavisDisease Affiliation: Walker-Warburg Syndrome
I have two daughters, Kai (5) and Tala (2). Tala has Walker-Warburg Syndrome (WWS). Walker-Warburg Syndrome is a severe congenital muscular dystrophy effecting the eyes, brain, and muscles. Because of this rare diagnosis and the limitations in time it entailed, our family began an adventure list of experiences to “do” together. Our goals are focused on connection and taking in each moment whether that is feeling the rain on your skin or watching fireworks at Disney World. Because rare disease effects such young individuals, and there are not many wish granting organizations serving the 0-5 age population, our family started Little Warrior Wishes, Inc. to assist families in creating lasting memories when timeframes are limited. Though rare disease can be an extremely tough life, being able to connect with others through this journey is such a blessing.