The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
Nine years ago I had never heard of Huntington’s Disease. Today, it is quite possibly one of the largest aspects of my life. It all began on a spring night at a local bar in Charlestown, MA. From the moment I saw him across the room, I knew one day he would be my husband. Andrew Stricos, a young and successful attorney in Boston asked me on a date. There was something different about him; regardless of the spark in his kind eyes, he seemed nervous and stuttered when he spoke. I took it as first date jitters. Early into our relationship, Andy shared with me the struggle of losing his father, Jack to Huntington’s Disease the year prior and told me that there was a 50% chance he would also inherit the disease. I thought nothing of this at the time and told him we would deal with it should it ever come to that point. Curious about our conversation the night before, I googled “Huntington’s Disease” when I awoke the next day and immediately my heart sank. I read nearly everything available pertaining to HD that morning and suddenly everything made sense. The slurred, stuttering speech and awkward pauses wasn’t first date jitters at all; it was the early symptoms of Huntington’s. Fast-forward two years and madly in love, the talk of marriage and children was a constant hot topic. Aware of the Stricos family history of HD, we spoke to a fertility specialist/reproductive endocrinologist to see what options, if any were available in order to start a family. We connected with Brigham & Women’s Hospital, Dr. Mark Hornstein, at great lengths to which point we were informed of Preimplantation Genetic Diagnosis (PGD); a procedure used prior to implantation to help identify genetic defects within embryos created through In Vitro Fertilization (IVF) to prevent specific disorders from being passed on from an affected parent to child. After months of extensive genetic counseling, predictive testing with a HD positive result and insurance approval, we finally received the green light to move forward with starting our family. Over the span of two and a half years, Andy and I suffered through immense heartache of multiple failed IVF cycles due to HD positive embryos and healthy embryos not flourishing. I had never known disappointment like this before, nor had I ever felt a stronger love and bond with anyone as I did my fiancé at that point in time. In September 2013, two months after we celebrated our marriage, we agreed to give it an all or nothing shot and had our last two HD-free frozen embryos transferred. Two weeks later, we received a phone call that forever changed our lives; the transfer was victorious and we were pregnant. Memorial Day Weekend of 2014 we welcomed our beautiful, healthy, HD-free twins, Jack Andrew and Scarlett Marie. Throughout our journey together, Andy and I have made each other better. We have been faced with the absolute worst of the worst, and overcame every obstacle thrown at us only to turn it into the best of the best. Times have been hard, and we have struggled immensely and taken it out on each other. We are human. We prevail and our love and support for one another is stronger than any hindrance we will be faced with. We have developed a great relationship with Dr. Sam Frank, Andy’s neurologist, whom has helped us on various platforms. I have successfully participated in numerous HDSA events, including building Stricos Strong and raising over $13,000 for the Team Hope Boston Walk in 2015. I have been involved with silent auctions, hoop-a-thons and education symposiums striving toward achievement of the HDSA Mission. I am an active member of the Board of Directors for the Massachusetts Chapter of the HDSA and serve on the committee for the Team Hope Boston Area Walk. In November 2015 I spoke at the State House to pass a bill in favor of HD. In February 2014, we were honored at a luncheon at the Taj in Boston on Rare Disease Day by an incredible man, Phil Reilly, to talk about our family living with Huntington's Disease. It was the first time Andy publicly spoke about his fight; I have never been more proud of him as I know it was the hardest thing he has ever done. We also discussed the struggle we went through with extensive genetic testing when we decided to have children. We have established a special relationship with Phil Reilly and our story was published in his latest book, "Orphan: The Quest to Save Children with Rare Genetic Disorders." Bringing recognition to this disease is imperative and families need to know that even though there is no cure or effective treatment at this time, it can potentially be stopped through PGD. I could not be more proud of our family and count our blessings every day. People fighting HD and people who are caregivers for those fighting HD need to know that it is ok to be angry and cry, and it is ok to feel defeated; there will always be someone there to talk to and listen. We need to focus on educating and bringing awareness to this epidemic so that resources are available to everyone.
Andrew is now in the early-mid stages of the disease and has resided in the HD Unit at Tewksbury Hospital for almost a year. This disease sucks. It tears families apart and is the truest test of a person's everything. However, our family is different. We are STRICOS STRONG and HD will never win. It will never take over. Most of you know our story, so I will leave you with this. Be nice. Be a good person. Be the best you, you can be. Tell your people you love them. Hug your babies. Hug your husband and/or wife until they can't breathe. Laugh. Cry. Take in every single moment and feel it until you are numb.
Across the United States, HDSA currently supports:
•54 volunteer led Chapters & Affiliates
•30 Centers of Excellence
•40 Social Workers
•170 Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
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Thank you for your support!