Why telling your story matters

By Chelsea Castonguay

In case we haven’t met yet, I’m Chelsea, the writing director for Living with XXY. I’m also the mother of Noah, who is three years old. Noah is a boy who has a wonderful sense of humor, a gorgeous smile, and he loves all things Donald Duck. He’s smart as a whip, has a photographic memory, and is always ready to strike a pose for a photo. Noah also lives with 47, XXY, or Klinefelter syndrome.

We found out tentatively when I was about 15 weeks pregnant following genetic testing. What followed was months of fear and uncertainty until he was born and we got to hold our beautiful, perfect baby boy. I knew I’d do absolutely everything necessary to protect him, as most parents would. What I didn’t know was there’s no playbook for how to raise a boy with Klinefelter syndrome. Even though it’s one of the most common chromosomal disorders, it’s widely understudied, and in many circles very misunderstood. Most of the information available is outdated at best, and horrifying at worst. We decided to keep Noah’s diagnosis to ourselves, because we were afraid people might look at our sweet boy differently, or judge him. To us, he’s Noah. The extra X chromosome is merely part of who he is, but not the sum total of it.

I felt beyond fortunate when I stumbled upon Living with XXY on Instagram. Suddenly, we weren’t so alone. There’s a whole community of people like us, raising boys with KS. There are men who are handsome, healthy, and doing well. As time went on, I got more involved. I started volunteering with the organization, and Ryan put me to work on some projects. From there, I got to see firsthand how truly spectacular the community is. It made my heart soar to see all the amazing things Noah could be. I can’t express how honored I feel to be part of this organization, and to help share your stories. 

Opening the door to the community:

Living with XXY

Still, we were really quiet about Noah’s diagnosis. In retrospect, I was scared of what people would think. No one wants to admit they care what other people think, and mostly I don’t. For those who know me in real life, I do my own thing, opinions be damned. However, when it’s your kid being judged, that cuts deeply. I want to shield Noah from any kind of harm, which I know he may face someday. He might encounter people who don’t take the time to understand what KS is, who might see him as an “other”, or bully him. I won’t always be there to block every hurt life has to offer. However, I’m working hard now to lay a better foundation for him, and for other parents raising boys with 47, XXY.

Recently, the organization was approached by a company to collaborate on a project. They wanted to share information about Klinefelter syndrome with a wide audience of people who are not familiar with it. At first, this seemed like an incredible opportunity, because as we know, it’s hard to get a large group’s attention. However, we realized their goal in sharing the information doesn’t align with our mission and values. As hard as it is to turn down that kind of opportunity, we’re willing to do so. We have also opened lines of communication with the media, and hope to continue correcting their perceptions of KS. I encourage you to also make your voices heard, and reach out to these outlets as well. 

When people learn about Klinefelter syndrome for the first time, we want it to be in a supportive, compassionate, and inclusive environment. We continue to build our partnerships with healthcare providers, research institutions, the media, and medical book publishers to help continue this culture shift. 

We need you to share your story:

I’m writing this today for a couple of reasons. First, I wanted to let you know as members of this community, we will continue to fight for you, and for our sons. It’s our goal to make Living with XXY the go-to resource for information, support, and advocacy. In order to do that, we need your help. Storytelling is one of the best ways to effect change. Your stories, who you are, and what you’ve gone through have power. Not only can you make a true difference, you are the ones we need to help lay that foundation for a safer, healthier, and brighter future for other boys and men with Klinefelter syndrome.

Changing the narrative around KS isn’t an easy thing to do, but it’s happening. Together, we can share our stories to help encourage others. You’re the role models our sons need, and the people they can look up to as they grow up. For parents who are receiving the diagnosis prenatally, or men just discovering this important part of themselves as adults, this support system is critical.

I hope to continue sharing more about our story of prenatal diagnosis, our choice to utilize early intervention, my involvement with the foundation, and Noah as he continues to grow. If you’d like to share your story with us, please reach out! We can’t wait to work with you.