Love Is Stronger Than Huntington’s Disease
By the time you read this, an important day in my family’s life will have occurred: Alexus, our only daughter, got married on Nov. 25. She and her now husband, René, met in their senior year of college and have built a beautiful life together since then.
They decided to have a small ceremony with immediate family to save money for a larger event in a few years. As parents, Jill and I have been blessed to have a daughter like Alexus. Now, we are equally blessed to have René join our family. He and Alexus are smart, hardworking, thoughtful, and compassionate.
In the midst of all this joy is a sobering truth: Jill and Alexus are gene-positive for Huntington’s disease, which gives them a sense of urgency to live their lives, and a clarity about what’s important to them.
Alexus is only 24, which may sound young. According to the U.S. Census Bureau, the average age for a woman’s first marriage is about 28. However, Alexus knows that René is perfect for her, and doesn’t want to wait years before she makes a commitment to him.
When we first met René, we liked him and hoped he would make Alexus happy. After getting to know him over the last few years, I can say with certainty that we love him and are over the moon that he and Alexus are together. This makes it easy to welcome him into our family.
When I married Jill, I had seen firsthand what Huntington’s does to a person, as her father had suffered for years with the crushing symptoms. As a result, I knew what could happen to Jill, and possibly Alexus, but I didn’t care. I would love them and take care of them forever if I needed to.
Alexus hasn’t felt well the last couple of times we’ve visited her. Usually, when our daughter isn’t feeling well, Jill goes into caregiver-mom mode and babies her, which she did — but we noticed that René was also taking care of her.
The last time we visited them, Jill told René that whenever she said goodbye to Alexus in the past, she worried that no one would be able to care for Alexus the way she did. We always felt sad upon leaving our daughter.
On this visit, however, we realized that René loves Alexus, and she is in good hands. We trust that he will be there for her, no matter what.
This brings us a lot of peace. Taking care of a loved one with Huntington’s is rigorous and challenging, but many people do it. Jill’s mom did it for Jill’s father, and I will be there for Jill in the years ahead.
And now, because Alexus made an excellent choice in whom she married, we know that, whenever Huntington’s starts affecting her, René will be there as her caregiver — because love is stronger than any disease.
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Therese Crutcher-Marin
Thank you for sharing about your family and Huntington's disease. I got goosebumps when I read this one as I married into a family at risk for Huntington's disease. Living at risk with my husband and his three sisters, they were my dear friends, absolutely made me mindful every day of the joy and blessings I had in my life. My sisters-in-law have all passed away from HD complications and John and I were on each of their HD journey. I published a book, "Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington's. We gave 100% of the profits to HDSA. My author/HD advocate website theresecrutchermarin.com
Carlos Briceño
Thank you Therese for sharing your story with us. I am so sorry for your losses and am grateful you were able to write about your journey. I understand it’s difficult to do that but I know you have touched lives with your words and donation.