The D’Alonzo Family

“When I was very young I was adopted into an incredible family. My grandmother in my adoptive family had Huntington's disease and it was something I grew up with, seeing how it impacted her and her family on a daily basis, until ultimately she passed away from HD.  Despite the disease and the eventual lack of her ability to verbally communicate, she was always smiling and always had a butter cookie snack ready for her grandkids whenever we would visit! I felt thankful that my adoptive father did not inherit the gene and growing up I felt lucky that I genetically would not have to worry about it for myself or my future family, either. Still, I had/have a small bow making project called "Blue Bow Co." where I donate the profits I make from baby bows to HD research, locally. We participate in fundraisers for HD here in Rochester as well, such as the Bill Lawler 5K and a golf tournament. 

Much later in life, after marrying my amazing husband Anthony and having two beautiful boys- James and AJ, I learned some family medical history from my biological family, which shockingly included my biological grandmother also having Huntington's Disease. Because I was already familiar with this disease and how much it can change your future, I pursued genetic testing for the Huntington gene and very unfortunately found out that I have the gene for HD. My husband and I really wanted to continue to grow our family and this news absolutely devastated us for that reason and, as you can imagine, so many more. This grant allowed us the funds and opportunity to ensure that our subsequent children would not be impacted by HD and allowed us to make our family whole in that sense. Josiah was the missing piece to our family and we are truly blessed and complete in so many ways. We move forward with hope that there will be a cure that will free a pretty large dark cloud that looms over so much of our future and try to remain as positive as possible by making connections in the HD community and supporting one another.” 

- Tracey D”Alonzo