Faces of HD

Meet Ron

After a few years my family and I began observing some abnormalities with my wife Linda.  Her and I had several appointments with her doctor and we then decided to investigate her biological father who she never knew. We found out that he had Huntington’s disease and already died from the disease. She was then tested at University of CT Farmington Huntington disease clinic.

On March 4, 2008 we received the results and our world changed forever. Linda and I had three children who were at risk and she was faced with being early in Stage 2 of the disease and it appeared to take over quickly.  Linda passed away October 20, 2014.  The disease took her a lot faster than we wanted it to and quicker than we had all anticipated.

HD has taken the love of my life from me. It has also taken away the mother of my young children, Nathan was 16, Sydney 14 and Michaella was 8 when she passed. Lynn loved life and everyone in it. Her famous saying was, “I love you MORE”.  It brought our immediate family close as everyone was active in Lynn’s life. Aunts, uncles, brothers, cousins, friends, parents, husband and children were always visiting her. She had “rock” star status. Every resident and visitor loved to visit with Lynn.

HD is The Quintessential Family Disease because of its genetic make up, passing of the gene from parent to child is like no other major disease that I am aware of. Heart disease, diabetes, cancer, can have some family history connections but to identify a specific gene repeat that guarantees the disease solidifies the meaning of Family disease. If one of your parents has the disease, then you have a 50/50 shot of inheriting the gene.

WE NEED a cure or a way to silence the gene for our children’s generation.

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