The young women featured in this series have not only earned Girl Scouts’ highest honor by being named 2016 National Young Women of Distinction—but they also serve as incredible examples of what it means to be a G.I.R.L. (Go-getter, Innovator, Risk-taker, Leader)™.
I am living proof that someone with trisomy X can not only live but thrive. Not many people know that. In fact, very few people even know what trisomy X is. Girls like me who have trisomy X have three X chromosomes instead of just two. That’s it! It’s not a disease. It’s just something you can be born with.
People who have that third chromosome can have learning disabilities, speech disabilities, and certain physical characteristics, too. Different girls are affected by trisomy X in different ways. But we can also do incredible things, especially if we’re diagnosed and have support. The problem is, most girls with trisomy X end up going undiagnosed. Only 10 percent of girls who have it know that they have three X chromosomes. And there are a lot of people who could have trisomy X—in fact, 1 out of every 1,000 girls could be born with it.
As someone who knows the effects of this disorder so personally, I made it my mission to educate as many people as possible about trisomy X—including doctors, who don’t always have all the information or don’t always share the information with women who may be pregnant with a girl who could have trisomy X. So for my Girl Scout Gold Award project, I built a website that teaches people about trisomy X and have so far already reached more than 2 million people!
Prospective parents should have all the facts they need to make informed decisions. But those aren’t the only people who need to learn about trisomy X. People in general need to know about it so we can help get more girls diagnosed and provide them with support, like speech therapy, tutors, occupational and speech therapists…even just the understanding of those around them.
I’m proud of my work, and I’m proud to serve as an example of a young woman with trisomy X who is living a normal life and looking forward to achieving even bigger and better things.