Welcome to Avleigh’s Journey! Kristy, Avleigh’s mom, created this blog site in efforts to share Avleigh’s story, hoping to bring awareness to her rare disease (PCH2D) and to help others experiencing the same type of obstacles. It started out as a resource for documenting her ever changing medical condition and has lead into therapy writing, helping her cope with the on-going journey of a rare genetic disease.


Avleigh was a little girl that battled many complex medical conditions. Through her journey we did our best to give her the best quality of life, considering her circumstances. The biggest blessing we have with being Avleigh’s parents is witnessing her strong connection with others which have touched and motivated so many. She was a tough, brave little girl with the most contagious smile and laugh. She was truly happy with life itself. She didn’t allow her disabilities, or even the pain she suffered, to stop her from enjoying her time with her loved ones. She’s our angel and a reminder for many on what life should really be about… family, friends, and happiness!