On January 2, 2016, our first-born daughter, Parker Avery Greenberg, entered this world. From the moment we locked eyes with her, we fell madly in love, but deep down, we sensed something wasn’t quite right. Parker quickly began missing every milestone, and our first two years were filled with intense stress and countless doctor appointments as we searched for answers that seemed impossible to find.

Just one week before her second birthday, Parker was diagnosed with an extremely rare genetic syndrome called HIST1H1E Syndrome, which left her with severe special needs. This syndrome had only been discovered in May 2017, 1.5 years after Parker’s birth. At that time, she was just the eighth known case in the world.

From day one, Parker has taught us so much. We’ve learned never to take anything for granted. What many call milestones, we lovingly refer to as “inchstones,” celebrating every small bit of progress. Parker continues to amaze us every day. She is the hardest-working little girl we know. Since the age of two months, she has participated in every therapy imaginable—physical, occupational, speech, aqua, and now even horse therapy. She tackles every challenge with a smile, a positive attitude, and remarkable determination. To our delight, her hard work has paid off: Parker began walking just after her fourth birthday. While her speech is limited for her age, she continues to make strides, recently stringing words together and even reading simple sentences. We are in awe of her progress!

Daily life for Parker and our family is undoubtedly challenging. In addition to her intensive therapies, she is regularly seen by a large team of medical specialists. Parker has already undergone multiple surgeries and procedures and has faced terrifying medical emergencies that no parent should ever have to witness.

In April 2019, we connected with Dr. Yong-Hui Jiang, Chief of Medical Genetics at Yale, who miraculously took an interest in Parker’s syndrome and has dedicated much of his time to finding a cure. From his commitment, Parker’s Cure was born. Because Parker’s syndrome is so rare and classified as an orphan disease, there is very little research or information available. Orphan diseases typically do not receive funding from the government or the National Institutes of Health, relying instead on private foundations for research support. Recognizing this, we established a 501(c)(3) foundation to raise money for clinicians studying HIST1H1E Syndrome. Last year, however, Dr. Jiang and his team won a $40 million NIH grant, which gives us great hope for a potential treatment for Parker and other children. If Parker can have a 5-10% better quality of life from this “cure,” we would be thrilled. Over the past seven years, with the incredible support of friends, family, and our community, we have raised over $600,000 to help fund Dr. Jiang’s groundbreaking research.

https://www.parkerscure.org/

https://medicine.yale.edu/news-article/large-nih-grant-supports-crispr-based-gene-therapy-development-for-brain-diseases/

https://hist1h1esyndrome.com/

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