Movement difficulties, such as involuntary/jerky movements and difficulty with balance. Cognitive difficulties, including problems with memory, concentration, and judgement, leading to impulsivity and poor decision making. Psychiatric symptoms including personality changes, mood swings, depression, irritability, and apathy. These are only some of the symptoms I watched my father suffer with, for years.
The involuntary movements, or chorea, were the worst. I remember struggling to want to be around him because I couldn’t imagine seeing him like that. I remember deciding to stay out of the house longer, or not come home from school because I would have to see someone that was slowly becoming a stranger. Walking into the the home I lived my whole childhood, to someone I struggled to recognize. I had to sit back and watch my father struggle with the littlest things, like holding a fork to feed himself. My father who was always the one everyone went to when something needed fixing. The one who would drive hundreds of miles to see his children. He loved driving so getting to the point that he had wrecked his car must have been devastating to him.
I remember him sitting in that hospital room, knowing that I had avoided seeing him like that for a while. I always made excuses to not go because I didn’t think I could handle it. I didn’t think I could handle seeing my father sitting in a hospital bed, being fed his food, and unable to care for himself. I knew it was near the end and I did not want to accept that.
I was so angry at my father for a long time because him and my mother chose to make us at risk for HD. That I was not going to be able to have children who are related to me. I was meant to be a mom, I’ve known that for a long time. I want mini me’s and the person that I love, running around all over the place. And I still want that, in the future, but I have come to the realization that I do not want to wait for a partner as it could be years until I find someone worthy. That would take away valuable time which I could be spending with my children. Valuable time which I cannot afford to waste as long as there isnt a cure. So for the past 12 months, I have come to the realization and decision, to pursue IVF PGT with a sperm donor so that I can have babies that are free from HD.
In Vitro Fertilization is stressful on its own, but having to do special genetic testing in order to have babies that are free from a genetic disorder is another kind of pain. IVF is a leap of faith, with no guaranteed solution. IVF with Preimplantation Genetic Testing for Monogenic Disorders (for single gene recessive/dominant), gives families who may have a genetic condition that can be passed down to any offspring, such as Huntington’s Disease, an opportunity to possibly have children who do not have the condition. There is a chance that all created and biopsied embryos could be affected by the condition, and therefore, unsuitable for transfer.
I believe that it takes a unique type of strength, to take the chance on IVF, knowing that many come out of it, with less than they came into the process with. I heard a quote one day that said, “The strongest women become the strongest mothers before their children are even conceived”. For the past year, every decision I have made about my fertility and reproductive journey has been for the well being of my future children. The idea of putting those who I am supposed to protect, through the uncertainty of whether they had inherited the HD gene or if they had won the good side of the coin flip was a no-brainer. That is not a decision that I could make and still have a clear conscience. IVF with genetic testing is an incredibly difficult decision to make, and it will be full of outside opinions, but women and couples who decide on the testing, are determined to have healthy babies, safe from the genetic condition(s) that the parents may have. I knew that if I had decided to risk their lives, I would feel incredibly guilty and that I wouldn’t be able to look my babies in the eye, and not feel like the worst mother in the world.
Imagining the feeling when you finally hear the words “Your baby is negative for the ____gene”. It is an indescribable feeling, isn’t it? For those who were unlucky enough to inherit a gene that either kills, or seriously affects the individual during their lifetime, it is the best feeling in the world. This journey has been one of the hardest things that I have ever gone through, but it will be all worth it when that healthy baby is placed in my arms. Since the day I heard about my father’s diagnosis, I knew that I could not, in good conscience, have my babies go through the pain of the unknown that I have had to deal with for years. I am supposed to protect them, and I wish more than anything that I could save them from losing their mother, but I can at least assure myself that HD ends with me in my family. I spent years since my father’s diagnosis paranoid as to whether I was to suffer the same fate. Whether a simple saliva test would tell me that I was going to die from this disease. Sometimes I wish I could go back to my childhood, solely because that was when I was carefree and wasn’t able to comprehend what Huntington’s truly was.
Huntington’s Disease has been a part of my life for the past 27 years, and will continue to be as the years go by. Even though I am taking what some people would say is the more difficult route to children, I would choose IVF over and over again if it meant that I could have biological children, and can save them from inheriting the terrible fate that their mother has. IVF has been and will continue to be one of the most difficult experiences that I have ever gone through, but in the end it will be oh so worth it. I only wish I had the capability to give them a mother who is healthy and who does not have a self-imposed timeline on her life. But no matter what, my babies will know just how much their mother loves them and how much she was willing to endure for them to come into the world.
Stopping the Story 
Leave a comment