Our Story

On January 2, 2016, Parker Avery Greenberg, our first-born daughter, came into this world. From the moment we locked eyes with our baby girl, we fell madly in love, but also knew in our hearts something was not right.  Parker quickly failed to meet every milestone, and our first two years were filled with inordinate stress, and countless doctor appointments to find answers that didn’t exist. Just a week before her second birthday, Parker was diagnosed with an extremely rare genetic syndrome called HIST1H1E Syndrome, rendering her with severe special needs. This syndrome had not been discovered in science until May 2017 (1.5 years after Parker was already born).  Parker was only the 8th case at the time. 

Parker has taught us so much since day one. We have learned not to take anything for granted. Coveted milestones become “inchstones” as we look for the positive every day, even if it’s just a tiny bit of progress. Parker continues to impress us daily. She is the hardest working little girl we know. Since the age of two months, she has been in every therapy you can imagine-physical occupational, speech, aqua, and now even horse therapy. She conquers everything with a smile on her face, a positive attitude, and with the utmost determination. To our delight, her hard work has paid off. Parker started walking right after her 4th birthday. While she has limited words and language for her age, her speech continues to develop, and she has even started to string several words together and read simple sentences.  We are amazed at her progression!

Daily life for Parker and our family is certainly challenging. In addition to her therapies, she is seen by a large team of medical specialists. She has already faced multiple surgeries and procedures and has put us through some terrifying medical emergencies no parent should ever have to go through. 

Since Parker’s syndrome is extremely rare and is considered an Orphan Disease, there has been limited information and research available. Orphan Diseases typically do not receive funding from the government or the National Institute of Health; rather, funding for research comes from private foundations. Because of this, our family worked to set up a 501(C)(3) foundation to raise money for clinicians who are studying children with HIST1H1E Syndrome. In April 2019, we connected with the Chief of Medical Genetics at Yale Dr. Yong-Hui Jiang, who has miraculously taken an interest in Parker’s syndrome and has focused much of his time researching a cure.  From his dedication to our cause, Parker’s Cure was born, and we have been raising money for the past six years to help fund Dr. Jiang’s amazing research. To this date, we have raised over $300k thanks to all of our friends, family and the local community.