As half of the well-known multi-platform WestportMoms duo, Megan Rutstein is used to publicizing important causes.
This one is personal. She encouraged her sister Kimberly Greenberg — also a Westporter — to reach out to “06880” readers. I’m honored to pass Kimberly’s message along:
When our daughter Parker was born on January 2, 2016 we instantly knew something was not right. She was born with a very rare genetic condition, HIST1H1E Syndrome that leaves her with severe special needs.
She was the 8th case diagnosed worldwide, a week before her second birthday.
Parker has taught us so much about ourselves and life since day one. We have learned not to take anything for granted. The coveted milestones become “inchstones” as we look to move forward every day, even if it’s just a little progress.
Parker continues to impress us daily. She is the hardest working little girl we know. Since 2 months old she has been in every therapy imaginable: PT, OT, speech, special education, aqua and equine.
She conquers everything with such a positive attitude, and it pays off. Parker started walking right after her 4th birthday. She has limited words and language, but she continues to grow in this area. She is starting to put 4-word sentences together, and even read.
Daily life for Parker and our family can be challenging. She is seen by a large team of medical specialists. She has faced multiple surgeries and procedures, while putting us through some scary medical emergencies. Our determined little girl has never given up. She continues to teach us new things daily, including how to stay positive.
We are beyond fortune to live in Westport and Fairfield County. From early intervention through Star Rubino Family Center to Stepping Stones preschool and now kindergarten at Coleytown Elementary, these programs and schools have been instrumental to her continued success.
Most importantly are the people and this community. They stand behind Parker and our family, while continuing to be our biggest cheerleaders and supporters.
Since Parker’s syndrome is very rare, there is limited information and research. It is considered an orphan disease, which rarely get funding from the government or National Institutes of Health.
Most research funding comes from private foundations. This is the main reason our family set up a 501 (c)(3) foundation for families who have loved ones with HIST1H1E Syndrome.
The foundation raises money for clinicians who study this syndrome. In 2019 we connected with the chief of medical genetics at Yale, Dr. Yong-Hui Jiang. He taken an interest in Parker’s syndrome, and focused much of his time researching a cure.
Between our family setting up the foundation and working very closely with Dr. Jiang, Parker’s Cure was born. It has raised over $200,000 in the past 5 years, thanks to our friends, family and the local community.
Next Friday (January 27, 8 p.m.) we are hosting the first Parker’s Cure Bowling and Booze Bash at Bowlero Lanes in Norwalk, to fund the Parker’s Cure and HIST1H1E Syndrome Foundation. We have already sold over 170 tickets, and raised over $25,000.
Click here for tickets. They include 2 1/2 hours of bowling, a premium open bar and heavy appetizers.
In addition to bowling, there will be an auction with sports tickets, autographed memorabilia, once-in-a-lifetime experiences, JL Rocks jewelry, Jessie Rubin artwork and many more local goodies.
Bidding begins on Thursday, January 26 (10 a.m.), and ends at 11 p.m. Friday, January 27. Click here to see all items.