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Created ByEMILIA LOUISA PUCCIUX, INTERACTION & WEARABLE TECHNOLOGY DESIGNOriginal Content CreatorLIVING WITH XXYA human-friendly logo for ...
After years of misdiagnoses, Lawrence teen found to have little-known disorder; parents hope to raise awareness
Original Article by LJWorld Julie and Brandon Urban only wish they had the cards sooner. Then ...
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What they say
“Ryan is a remarkable young man and a true gift to the XY Variation community. Not only does he bring hope and inspiration to parents who have recently learned of their child’s diagnosis, but he also serves as a role model to the kids who are trying to understand their symptoms and find someone they can relate to. We are most excited about his efforts to bring much-needed awareness to XY Variations. My husband and I have been passionate about this since learning of our son Colton’s diagnosis, having established a nonprofit foundation, Colton’s XXXtraordinarY Cause, to try to achieve this. Ryan’s voice, charisma, confidence, work ethic, honesty, and humble nature is exactly what is needed to bring XY variations to the national stage. He already has and will continue to have an incredibly positive, life-changing impact on so many lives. Looking forward to seeing what the future brings to XY Variations with Ryan at the forefront.”
While scrolling through videos on YouTube a few months ago I ran across one of Ryan’s first videos. I was intrigued because he lives very near me in San Diego. I watched his video and I was taken with how open and positive he is! We made contact and now he is one of my go-to people for xxy issues. My 8-year-old son is 47xxy and I am excited for him to meet Ryan. But not only that, Ryan is just a great person and I’m happy to call him my friend. My husband and I had lunch with Ryan a few weeks back we both just love him! He is not without his struggles (none of us are), but his focus on the positive and his the glass is half full attitude gives me comfort for my boy. Thank you, Ryan, for being you!
Despite seeing multiple specialists and making sure my son received the best treatment possible, there was still so much about XXY that we didn't know. Ryan and his Living With XXY project have provided my husband and me with a candid, informative, first-hand account of what the future may hold for our son. It has empowered us and brought so much positivity into a situation that at times felt overwhelming. We could not be more grateful for everything!
I'm a mom of two boys from Finland. I just wanted to say thank you for your videos on YouTube and your Instagram account. I've watched all your videos and those have helped me a lot. I found out last week that my 10 months old boy is xxy. At first, I was in shock but not anymore. Luckily there are people like you who give information about xxy and makes it easier to understand what's it all about.
A few months back my son came into my room to return my computer.he had the page up on Youtube like most teens he was looking at a gaming instructional video. Something inside me ( who never goes on YouTube) decided to put in Xxy. There you were, it was Amazing! Not only was I so impressed and amazed by Ryan’s positive yet realistic outlook on Klinefelter's he also lives in my town .. I asked my son to come back in the room and watch .his eyes lit up maybe for the first time. He has the same thing I do he said. I logged out and went to Facebook within minutes another mom I know on a support group had posted Ryan’s video! I decided to reach out and call him and he answered the phone. Amazing. So Ryan and I have spoken a few times but still, have yet to meet. He took off like wildfire as he should! I can feel it in my bones He could be the one to educate the world about this condition or whatever you choose to call it. I understand that this is supposed to be a testament to how you “Ryan” has helped us but simply by being true to Yourself is how you are. Sometimes it is the little things that matter like the phone calls you have had with me in the middle of your busy day. The sound advises you choose to give from your life experience as a child and now an adult with Xxy. The willingness to meet my son etc. Mainly for me, it is your kindness and an open heart. Your determination to make things better for others younger and older. I believe these qualities are wonderful. Thank you for being you.