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Erin's story

May 18, 2021

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:

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My husband and I were just getting home from a run with our friends. As we were walking through the front door my phone started ringing. I kicked off my shoes in a hurry and they landed haphazardly on the floor. My gym bag was still hanging from my shoulder as I answered the phone. "Hi Mom" I said unaware that the course of my life was about to change.

Most evenings my husband and I wouldn't get home until after 9pm. We were heavily involved in sports, playing on two baseball teams, a volleyball team, working out at the gym and training for half marathons. All of this after a long day at work. We finally felt established in our careers, we had an active social life and we had just bought our first home, a condominium in a busy urban city. Our lives were going along according to plan. In fact, we had recently announced to our families that we were trying to have a baby.

Erin first home

It wasn't until after they heard the news that my parents told us that Huntington's disease might run in our family. That's what my mom was calling to tell me that night as I was walking through the door. "You should probably look into it before having kids," she said. One phone call later and our lives had suddenly been thrown off track.

Since my biological clock was ticking I felt pressured into making a decision. Within a short 8 months I got tested and found out I was gene positive for HD. I fell into a deep depression as I struggled to come to terms with what my diagnosis meant for my life. In the midst of that pain my husband and I had to figure out what to do about having a baby.

Even though our child was now at risk of inheriting the gene we decided to conceive naturally. My life has value with HD and so will the life of my child if they happen to get HD from me. I told myself. Although I was already starting to wonder if I could live with the guilt if I passed along the disease.

After trying to conceive for over a year without any success we found ourselves under the care of a fertility doctor. On paper everything looked normal so we started off with fertility treatments that were as minimally invasive as possible. With each month that passed we tried new protocol, after new protocol until the only thing left was in-vitro fertilization (IVF). Since we were going to that extent we decided to do the IVF with pre implantation genetic diagnosis (PGD), a process that identifies which embryos carry HD. We tried IVF with PGD two times without success.

We spent the following year getting second opinions from doctors all over the city, trying to find an answer for our unexplained infertility, before we came to the conclusion that we didn't want to go through fertility treatments anymore. It was at that point that we decided to try adoption.

Erin birthday

My biggest fear with trying to adopt a child was that we would get turned down because of my genetic status. I knew if that were to happen I would blame myself for ruining our dreams. We went through the extensive process of becoming adopt ready, which meant taking parenting classes (PRIDE training) and going through a home-study which involved ten hours of interviews.

One hot Sunday afternoon, five and a half years after we started trying to conceive, we got another unexpected phone call but this time our lives were about to change for the better. We were amazed to find out that we had been chosen to be the parents of a baby girl that had been born the day before. One moment we were going about our lives and in the next we had become parents.

Trying to decide how to have children, or even if you want to have children at all, when a genetic disease runs in your family can be intense and even scary. Whether you decide on natural conception, IVF with PGD, donor egg/sperm, adoption, or child free living, you and your partner are the only ones who can decide what is right for you and your unique circumstances. If you start out on one path and it doesn't feel right, it's ok to change your mind and try something different. One of the things I have learned is we can't control everything that happens in our lives, we can only do our best with the information we have available at the time.

Erin Paterson

About Erin

Toronto author Erin Paterson tested gene positive for Huntington's Disease. Despite the diagnosis she was determined to have a family and live a joyful life. Her work was published in the anthology, Not Cancelled: Canadian Kindness in the Face of Covid 19. She was a columnist for HuntingtonsDiseaseNews.com. She has also been published on TheMighty.com, Adopt4Life.com, CanadaAdopts.com and has written for The Huntington Society of Canada (HSC). She spoke at the Huntington Society of Canada youth conference in 2018 and 2019. She has written a memoir about her experiences with Huntington's Disease and infertility, All Good Things, which is being released in Fall 2021.

Find out more at erinpaterson.com

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