Written By Ryan Bregante
To give some context to this blog post, the first part in quotes is from a conversation I was having with a mother of a son born with XXY. She was talking about how scary Googling Klinefelter syndrome can be. How the outdated information can lead people to think their child is some kind of monster riddled with health problems.
My husband and I aren’t 100% sure we are going to be totally public with our son’s diagnosis. We both want to be but are still cautious that it’s not our story. Another thing that makes me hesitant is that our son is doing amazing. It may not make sense but I’m scared that people will think I’m bragging or people won’t think that we belong in this community. XXY Mother
My response in real-time.
It is your story, you are your son’s advocate, if your son was born with down syndrome would you have the same thought process? When surrounded by nothing but negativity, how do you change that information? How do stigmas go away or change? How do you bring hope to families in the same shoes when you found out about your son’s diagnosis. How do you help families and help prevent unnecessary abortions? You show them how freaking amazing your son is, you teach him from a young age that he has saved other boy’s lives just like him. Even before he understands how important his life is, he has had an impact greater than any job promotion he will ever receive. Your son’s life, you, and your husband have the power to change the world for the positive, to give boys in utero a chance to come onto this planet and make a difference in other people’s lives. XXY isn’t going anywhere. Your son will have the understanding when you start to educate him on his own condition that he has already made a positive difference in other families’ lives.
If I was younger and I knew the difference I was making now, back then, it would give me a whole new purpose of being alive and on this planet, to know growing up that I have brothers all over the world just like me, that what I’m going thru, mental health, testosterone, how I feel, that others are just like me and that there will be a support system to talk to others going thru what I was going thru. The community is the strongest part of what we all have, it is our opportunity to change the world and show the world how amazing we all are.
People with down syndrome went thru the same gauntlet that XXY is going thru, now Down Syndrome has 100s of millions of dollars in research, intervention, programs, and everyone in the world understands what Down Syndrome is. People with down syndrome are standing up and advocating for themselves. All of this started with a small group of parents who saw the same light at the end of the tunnel as I did. If you don’t stand up who will? How will we as a community strive to bring awareness to something that so many see as invisible?
This is coming from my heart, I know it seems like a scary place stepping out of the shadows, but the support will outweigh the naysayers. You can lead the army into battle in Canada and help fight for what needs to change for our boys. We are all in this together.
If you raise your son to be proud of who he is, to let him know he has made a difference in this world by just being who he is, it will empower him to accept himself at a young age. He will have the support of his amazing parents, and all of the community his parents built for him over the years. He will embrace his inner weirdness. I’ve met people who are not XXY and it takes some people decades to understand and accept who they are. That they don’t have to fake who they really are to fit in and feel accepted.
This was written with love and a perspective that comes deep within many sleepless nights. I feel I was destined to be in this spot, that my 4 years of donating my entire life to this cause only drives my passion for a better life for those who will come after me. For research and medicine to evolve for our community, to find answers to many unanswered questions. And when your son is my age, he has the opportunity to give back to those who will come after him and have an even better quality of life than he did. I believe this can be achieved and every boy will have the opportunity to stand in my shoes if they want to.
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