I am at risk 42 year old man and high school teacher. On April 5th my wife gave birth to two twins through pre-implantation diagnosis. When we got married five years ago we were not certain that we would have children. I do not wish to know my genetic status. But when were heard that we could go through this procedure, and I would remain ignorant to my status, we began making inquires with clinics. I told my boss about it, and she told me that my insurance carrier was soon going to drop invitro fertilization, Emily (my wife) and I decided to go ahead with the procedure as soon as possible.  Unfortunately, we didn’t make the insurance cut off, but one year later we have two  very healthy twin boys named George and Gus.

Gus’s middle name is David, which is my father’s name. My father was diagnosed with HD 17 years ago and now lives in a nursing home at age 81. His brother was diagnosed in the early nineties and my father took a genetic test to “rule it out.” Neither of his parents ever showed symptoms of the disease and his CAG repeat is very low. I have attended support groups in Minnesota where I live, spoke about family planning at the National HDSA Convention, participated in a focus group working on the “Talking to Kids About HD” publication.

The greatest thing I have gotten from the HD community is the understanding that the abuse that I endured from my father was neither my fault, nor his, but rather, one of the devastating effects of the disease. It has enabled me to forgive him, and made me an effective caregiver for him. I actually like him more now than when I was a kid. Heck, I even named my son after him. One of my two HD negative sons.




Share this story on Facebook