Finding community with Living with XXY

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.

Diagnosis:

We found out tentatively when I was about 15 weeks pregnant following genetic testing. What followed for us was months of fear and uncertainty until he was born and we got to hold our beautiful, perfect baby boy. As soon as he was born, 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 Most of the information available is outdated at best, and horrifying at worst.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 if we told people, they 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.

Finding community:

I felt beyond fortunate when I stumbled upon Living With XXY on Instagram. Suddenly, we weren’t so alone. There was a whole community of people who were like us, raising boys with KS, or were grown men who were 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 saw firsthand how truly spectacular the community is. It made my heart soar to see all the amazing things Noah could be. I struggle to find the words to express how honored I feel to be part of this organization, and to share your stories. 

Still, we were really quiet about Noah’s diagnosis. In retrospect, I was scared of what people would think, which sucks to admit. 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 pretty much do my own thing, opinions be damned. However, when it’s your kid being judged, that cuts you deeply. I want to do everything possible 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 may bully him. I won’t always be there to block him from every hurt life has to offer, but I’m working hard now to lay a better foundation for him, and for other parents raising boys with 47, XXY.

The work we’re doing:

Recently, the organization was approached by a company wishing to collaborate on a project. They wanted to share information about Klinefelter syndrome to a wide audience of people who are most likely 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 currently align with our mission and values. As hard as it is to turn down that kind of opportunity, we’re willing to do so.

When people learn about Klinefelter syndrome for the first time, we want it to be in a supportive, compassionate, and inclusive environment. We’re going to do what we can to work with that organization to get them to a place of understanding, which I’m hopeful we can do. We continue to build our partnerships with healthcare providers, research institutions, and medical book publishers to help begin this culture shift. 

Our promise to the community:

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. You can make a true difference. We need you to help lay that foundation for a 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 and encourage others. You are 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, and our choice to utilize early intervention. As well as 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.