Social Media - Living with XXY Non-Profit

Social MediaRyan Bregante2020-04-13T23:15:25-07:00

livingwithxxy

Inspiring people and families living with Klinefelter syndrome, with a focus on the positive traits and successes of individuals across the spectrum.

Tracy Ford, a mother who lives in New Zealand and

Tracy Ford, a mother who lives in New Zealand and Myself standing in the rain for a photo together. Tracy has a young adult with Klinefelter syndrome. I planned my travels around NZ to meet as many families as I could. The people of Australia and New Zealand took very good care of me and I am very thankful to all of you for your efforts to show me your beautiful countries. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

Connecting individuals & families impacted by Klin

Connecting individuals & families impacted by Klinefelter syndrome and building a community is one of our top priorities here at Living With XXY. Ryan connected two families who have amazing toddler boys who are both thriving and living with KS. This sunny afternoon was spent chasing the boys around, playing with trucks, and enjoying positive conversations. We would love to help connect individuals & families in the community! Tell us where you’re from 👇🏻

Nighttime pre-bed massages for Jack. Massages hav

Nighttime pre-bed massages for Jack. Massages have shown to have a calming effect on children and promote lasting sleep 💤

*New post on our website - Our Community Blog*⠀⠀⠀⠀⠀⠀⠀⠀⠀
Colton’s XXXtraordinary Cause: Hope out of Hardship; A Rare Affair Indeed⠀⠀⠀⠀⠀⠀⠀⠀⠀
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There is perhaps no more remarkable moment in our lives than -if we are lucky enough- the experience of welcoming a child into the world. For the Hutchinson family, the birth of their son Colton brought with it the kind of intense love and connection typical for new parents. After a few months, Colton’s mother Michelle began to notice a few things about her son’s development that made her concerned enough to consult health professionals.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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At nine months old, Colton was diagnosed with 48XXXY, a rare condition that refers to a type of chromosome abnormality identified by the presence of two extra X chromosomes in males. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins #48xxxy

“I also had a fantastic opportunity to work in a

“I also had a fantastic opportunity to work in a proper Sourdough Bakery last Friday in a town about an hour drive from here. It’s called RedBeard Bakery. Quite famous over here. I mentioned to the chief baker that I was interested in opening my own place and he said to come across and get something experience. It was great!” Way to chase your dreams @aussiechef.geoff 🙌🏻@redbeardhistoricbakery
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#livingwithxxy #bread #klinefelterssyndrome #47xxy #breadmaking #baker #breadbaking #chef #cheflife

Matt Tatham, father of Jack (Age 2), shares his re

Matt Tatham, father of Jack (Age 2), shares his recent journey of fully accepting and embracing Jack's unique personality & interests. Matt opens up about how his lifelong thoughts about fatherhood were limiting his own relationship with his son. Matt learned to embrace Jack's Klinefelter syndrome. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #positivity #KScommunity #XXYcommunity #47xxy #facesofklinefeltersyndrome #chromosomecutie #lifewithKS #Homiewithanextrachromie #dad #dadlife #fatherhood #podcast #podcastersofinstagram #podcastlife #rodecasterpro #rode #rodemic #sonyaudio

When I arrived in Sydney, Australia in march of 20

When I arrived in Sydney, Australia in march of 2019 there was a wonderful family who gave me their home to stay in during the time I was there. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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During this time, Chris had just found out he was diagnosed with Klinefelter syndrome. Our mutual friend Emily who runs a nonprofit organization for Klinefelter syndrome in Brisbane Australia put both of us in touch. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We were able to make a day work and I am so glad I was able to meet Chris. He is having a baby any time soon with his lovely wife using donor sperm. Congratulations on becoming a father! ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

This is my 6-week-old son. He is a very happy and

This is my 6-week-old son. He is a very happy and healthy baby that breastfeeds well, has great muscle tone, and is extremely alert and interactive. He is just like any other 6-week-old and he has Klinefelter syndrome genotype.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We first became aware of the possibility that our son had Klinefelter syndrome through a NIPT test (non-invasive prenatal test) I took when I was 8 weeks pregnant. The main reason for having this test done, for us, was to find out the gender of our growing baby. A week after the blood test, my Obstetrician phoned to tell me the results. I eagerly answered the phone, excited to find out if we were having a boy or a girl. However, I was met with the somber voice of my obstetrician telling me the test results were in and there were some “red flags”.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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The advice I would give to an expectant mother of a Klinefelter syndrome baby is to just enjoy your pregnancy like anyone else and look forward to meeting your eXtra special little guy. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

Kelsey and I always love meeting new parents whene

Kelsey and I always love meeting new parents whenever we have the chance. I first met Jaime at the end of my very first clinic when a group of mothers asked me if "I was a father to a son with XXY" Jaime's son Luke has been featured in two Youtube videos with me and its been so amazing getting to know them.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Each Family I meet becomes a second family to me. I can't wait to get back on the road and start meeting more people. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

Our community continues to amaze us. Thank you @he

Our community continues to amaze us. Thank you @heyjamesparker for your bravery, openness, and positivity. You are an inspiration to us all! Stoked to see what the future has in store for you 🙌🏻💙 #livingwithxxy

*New Blog Post Klinefelter Diagnosis: Stefan Schwa

*New Blog Post Klinefelter Diagnosis: Stefan Schwarz*⠀⠀⠀⠀⠀⠀⠀⠀⠀
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My name is Stefan Schwarz. I have Klinefelter Syndrome, XY/XXY mosaic, and found out in February 1996 at the age of 25. Throughout my life before my Klinefelter diagnosis, my parents took me to many medical professionals to determine what my issues were. They knew that I had learning, social, anger, and behavioral issues. But they couldn’t put their finger on it until my XY/XXY Klinefelter diagnosis occurred.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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After my Klinefelter diagnosis and starting on testosterone therapy, my life quickly started to take shape. I was jumping out of my introverted shell that had gotten me through much of the first 26 years of my life. I moved to Burlington, Massachusetts the beginning of July 1996. #livingwithxxy

This is Eli and he is 17 years old from Provo, Uta

This is Eli and he is 17 years old from Provo, Utah. Eli was just diagnosed with Klinefelter syndrome 3 weeks ago. Eli also just had his first testosterone shot and said it wasn't bad at all. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I had a really good time hanging out with Eli at the beach and teaching him to paddleboard. In the beginning, he said he didn't want to stand up and he overcame his fear by slowly working from sitting, to kneeling, to standing. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Once standing he screamed out "this is so much fun". Meeting Eli and his family marks over 500 people with Klinefelter syndrome I have met since 2017. Even with all of the unknown going on, we continue to touch lives every day all over the world one smile at a time. #livingwithxxy

Here is Ryan with Mrs. Jew, his 2nd grade teacher.

Here is Ryan with Mrs. Jew, his 2nd grade teacher. 28 years later, Mrs. Jew still recalls the unique ways Ryan learned. Her teaching styles were out of the box, hands-on, interactive, and visual—a classroom fit & designed for brains like Ryan’s. One of Mrs. Jew’s favorite activities was teaching her students how to use chop sticks while celebrating the Chinese New Year. At 86, Mrs. Jew is young at heart and passionate about creating beautiful ceramics in her workshop. Ryan discovered his learning styles at a young age, due to individuals like Mrs. Jew. Our community needs more of the Mrs. Jews—the encouragers who will come alongside us and push us to realize our uniqueness & full potential 💙 #livingwithxxy

SNEAK PEEK❗️Our team had the privilege of meet

SNEAK PEEK❗️Our team had the privilege of meeting with the @bgapstudy team at Stanford University earlier this year. The Brains, Genes, and Puberty (BGAP) Study, funded by the @nihgov is investigating the development of brain & behavior in boys with and without Klinefelter syndrome.
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For the FULL video, please check out on our YouTube channel! (LINK IN BIO) 👍🏻

*New YouTube Video is Live*⠀⠀⠀⠀⠀⠀⠀⠀⠀
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I just had the opportunity of meeting Andrew this morning who was diagnosed with Klinefelter syndrome when he was 27 years old. He is now 29 and runs his own Hotshot trucking business based out of Salt Lake City, UT.⠀⠀⠀⠀⠀⠀⠀⠀⠀
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Andrew was dropping off a load in San Diego and we took the opportunity to meet up, make a youtube video and enjoy burritos together on the bed of his truck. Thank you again for meeting up! ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#hotshottrucking #hotshot #businessowner #utah #xxycommunity #getoutside #livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference

Messages like this reaffirm our mission of turning

Messages like this reaffirm our mission of turning hopelessness into positivity 💙 James sent us this message ONE HOUR after getting diagnosed yesterday! As a community, we are changing the outlook on Klinefelter Syndrome one day at a time, so that others, like James, will feel a sense of hope rather than disappointment 🙌🏻
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James is from Australia, where he is studying journalism & non-fiction writing 📝 His average mark at University is HIGH distinction (the highest level awarded) 👏🏻 His passion is telling & writing stories, a career goal of his. James plans on using his writing skills to help spread awareness for KS. We are thrilled to discover such talent in our community! Let’s all welcome our mate, James! 🤙🏻

Hey, what's up everyone, So I had the pleasure of

Hey, what's up everyone, So I had the pleasure of meeting Jake last June in Atlanta. We met online before meeting in person. The time always goes by so quickly when meeting people and someday we will all be able to meet and hang out over a big campfire. These are very special moments when you are able to meet another person who is living with xxy. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

In case you needed to hear some GOOD NEWS today 💙 This is an excerpt from the latest blog post on our website. It serves as a reminder to celebrate the many ways Klinefelter Syndrome makes our guys so incredible & unique. Stories + perspectives like this need to be heard as we work together as a community to change the conversation 🙌🏻 What makes you or your child unique? 👇🏻

*New Blog Post XXY Early Diagnosis Signs*⠀⠀⠀

*New Blog Post XXY Early Diagnosis Signs*⠀⠀⠀⠀⠀⠀⠀⠀⠀
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We found out about my son’s Klinefelter’s diagnosis when he was 9 ½ years old. We got the results of the genetic tests on a Thursday afternoon. The genetic counselor wasn’t available to talk with us until Tuesday. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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That was just enough time to fall into a scary Google Abyss full of misleading and outdated information. Google had very little of it about children with XXY. How I wish we had been referred directly to the genetic.org website on that very first day! I hope that in sharing our story, others might recognize how easy it is for Klinefelter’s to be hidden in plain sight. Maybe someone will even recognize their own child’s story in my words below. Keeping in mind that there is a wide spectrum, so symptoms can vary from person to person. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#livingwithxxy #xxy #klinefeltersyndrome #XXYawareness #nonprofit #travelblogger #genetics #KScommunity #XXYcommunity #47xxy #chromosomecutie #extrachromosome #Homiewithanextrachromie #endocrinologist #geneticist #makingadifference #awareness #volunteer #causes #donate #activism #LoveWins

Noosa Heads was the first place I went swimming in

Noosa Heads was the first place I went swimming in the ocean in Australia. After swimming I made this video because I was feeling alive and so good about booking a one way ticket to another country and traveling alone. It is a experience I still cherish today and I’m so glad I documented my trip for all of you to learn and see.
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#livingwithxxy #noosaheads #noosabeach #australia #noosa_qld #klinefelterssyndrome #xxy #makingmemories #makingsdifference #bethechange

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