Parker was born on January 2, 2016 and from that very first day of life, she has faced both physical and intellectual challenges.  Her days have been filled with multiple therapy sessions, that help her achieve the skills that most of us take for granted. Nobody works harder each day than she does!

During the past year Parker continued to get stronger when walking and physically, she has started to speak more words more clearly and put some words together and she impresses us daily on her communication device! She is the sweetest and most loving little girl and best big sister. She has started to play more with her little sisters who love her so much. She is our rock star, who continues to amaze us every day… our real life superhero! We could not be prouder of all that she has accomplished.

All proceeds raised go directly into the hands of Dr. Yong-Hui Yong for his research on HIST1H1E. We are fortunate enough to have him right here in our own back yard at Yale. He is the chief of medical genetics and is studying Parker's rare genetic disorder in his lab with Mice and Mini Brains...its unbelievable and ground breaking. We could not be luckier to have him fighting in our corner. 

After many months of not having a definitive diagnosis, we received a call on December 22, 2017 that Parker had the newly discovered HIST1H1E (HNDS) Syndrome. This diagnosis came just days before her 2nd birthday. We quickly learned that HIST1H1E Syndrome was extremely rare. In fact, Parker was the 8th identified case. As of October 2021, there have been approximately 65-75 cases identified worldwide (about 15 more cases than we had last year at this time).

Parker as Belle this past halloween who shocked and surprised us and walked the entire way trick or treating...this is a huge milestone for her!