Livingwithxxy

Seth and Erin have a son named Chipper, who was diagnosed with Klinefelter syndrome in utero from non-invasive prenatal testing. They have embraced their son's diagnosis, and Chipper has met all his milestones.

Nathan Johns started trying for kids around 28 years old. After trying for over a year and nothing, he went in for testing. He was told he had a low sperm count and low testosterone, but no further testing was done. After his first marriage failed he met his second wife with her knowing he couldn't have kids. Nathan ended up using embryo adoption and later learned he had Klinefelter syndrome.

Mother Kendra and Son Blake Dill talk about what it's like going thru high school. Blake is 16 years old, a sophomore, and plays in the high school band.  After a routine checkup while pregnant, the doctors told her Blake had XXY. 

Recently Ryan Bregante and Kelsey Fuglsby had the opportunity to be guest speakers at Hunter College in NYC. The Class is called Abnormal Psychology which has roughly 100 students. This video is just a few of the highlights from our hour-long conversation.   

1-500 men are born with Klinefelter syndrome, a genetic condition in which males are born with an extra X chromosome. Ryan was born with XXY and is the founder and president of Living with XXY Nonprofit. Kelsey Fuglsby is the mother of a 14-year-old boy named Elliott, diagnosed at ten years old. Only 25% of our community will receive a diagnosis. 75% will die, never knowing. You can find the video highlights HERE.  For more information, please visit: https://livingwithxxy.org/

This podcast is from a recent speaking engagement at New York University. The class is applied psychology, and the course is Sexual Identities Across the Lifespan. Ryan Bregante was born with Klinefelter syndrome and is the founder and president of Living with XXY. Kelsey Fuglsby is a mother to a 13-year-old boy, Elliott, who was diagnosed with XXY after birth.  

Jared Pike was diagnosed with Klinefelter syndrome nearly 10 years ago while trying to have kids. After trying for more than five years and multiple sperm tests,  a new doctor suggested doing a Karyotype. With his wife's support, Jared decided to take a year off from their fertility journey to process, understand, learn and grieve his new diagnosis.  Jared explains in incredible detail how this journey improved his life.

After Sierra Westley Wilson became pregnant at 27, she wanted to know the gender of their baby, so they did NIPT, and they were told they had a 36% chance of their baby having Klinefelter syndrome.  Once her son was born, they did a routine blood draw, and two weeks later, they learned their son had 48, XXXY. 

In 2021, the day after Christmas, Elliott was hanging out with his niece and nephew, who were 8 and 12. The kids were telling him that he was a fantastic uncle. Suddenly his niece told him he couldn't have kids and that he could adopt if he wanted to. He felt they knew something he didn't know. Elliott Day, from Scotland, in his late 30s, looked into getting his medical records from the NHS. He was diagnosed very young, but no one bothered to tell him.

At 41 years old, Ryan Brown opens up to spread more awareness about his life with Klinefelter syndrome.  When he had been trying to have kids with his ex-wife for over a year, the doctors recommended they both do fertility testing. After a sperm sample and a series of other tests, Ryan discovered he had XXY.  Ryan is now on track to compete in bodybuilding and is a head chef at a group home. 

Jennifer Fritz Voige spent eight agonizing years trying to find her son's Klinefelter syndrome diagnosis.  At the age of 5, Toby started to show challenges after they took away his nap.  In kindergarten, his teachers noticed some blank stares and let Jennifer know something might be happening. This was the start of their long journey.  Toby, now at 14 after his diagnosis in December of 2021, is thriving and started on TRT,  making huge strides toward success.

Jose Ferreira was diagnosed with Klinefelter syndrome while trying to have kids with his wife. A doctor gave them a blood test, and Jose had no idea what XXY was. After learning he was infertile, he experienced mixed emotions and finally realized there was some answer to knowing why he was different. He never thought it was related to his diagnosis. After his diagnosis, he was in denial for years, pushed away support, and tried to live everyday life.  Now Jose has come to a level of acceptance to share his extraordinary story to help others.  Jose gives excellent insight into his thoughts and has built confidence in himself.  He has his dream job and loves learning more about himself. 

Whitney Lance received a prenatal diagnosis of Klinefelter syndrome via email from the hospital after a NIPT. In big red letters, it read XXY. Her doctor urged her to see a geneticist, and Whitney panicked and went to google. The geneticist printed information directly from google and didn't have much more information to share. 

A very special daughter from donor sperm shares her unique story.  She learned about her father having XXY 30 years after she was born from DNA testing. Make sure you grab your tissues for her captivating story.  By far one of the most extraordinary stories in the entire podcasting community.  

Tyler Deur is the father of four-month-old Jax who was diagnosed with Klinefelter syndrome prenatally. Tyler and his wife decided to do NIPT testing to find out the sex of their baby for a gender reveal party. A doctor's phone call changed everything and a new journey started to form.  Jax is their first child and the love of their life.  Tyler talks about their entire journey and how they have embraced their son's XXY diagnosis. Very rarely do we get to hear a father's perspective and this is one you do not want to miss.  

Kristin is the mother of Cass, a 15-year-old boy living in Canada who was recently diagnosed with Klinefelter syndrome. Kristin talks about Cass as a child and his many struggles.  From not talking till four years old, dealing with the public education system, watching her child slip thru the cracks, to extreme bullying and countless doctor visits with no answers.  Despite all their family's challenges, Cass has overcome so many of his struggles and found acceptance living with XXY.

Dylan Mathis is a 26-year-old man living in Chicago, Illinois. Dylan found out he had Klinefelter syndrome in high school around 16-17 years old. After graduating from high school, he went to college with a unique education program and excelled with an art major. After dating the love of his life, he recently got married to his wonderful wife and works as a cable installer. Dylan talks about his struggles throughout his life and overcoming the challenges, gaining confidence along the way.

Greg is the father of Koa who is an adventurous 2-year-old who loves to skateboard, mountain bike, and be active in nature.  Greg talks about his experiences with raising a son who was diagnosed with Klinefelter syndrome and focusing on the things his son can do.  Greg's story is inspirational and paves the way for other fathers to reach out and tell their own stories about raising a son with Klinefelter syndrome.  

Tyler is a 34-year-old man who is currently living in San Diego, CA with his wife.  Tyler was diagnosed with Klinefelter syndrome at the age of 33 after 1 year of trying to have kids with his wife.  After Tyler's diagnosis, he tried Micro-Tese and was unsuccessful. Tyler talks about how he found Living With XXY's podcast and how the stories of others helped him with acceptance and moving forward.  

Have you ever wondered what someone's life might be like being on Testosterone Replacement Therapy for the past 23 years and counting?  Ryan shares all of his experiences with you from tips about traveling, insurance, pharmacies, and the trial and errors throughout his life. The purpose of this podcast is to help with education and self-advocacy, so others understand what to possibly expect with the many hoops we have to jump thru to keep our testosterone levels within the normal range.

In this episode, Ryan talks about his life battling the ups and downs with personal hygiene. Ryan goes far back to his early years in grade school when his parents used a star chart to build a routine, to now at the age of 36. This in-depth 50-minute podcast might give you a look into some of those boys and men who are Living With XXY and how to overcome their own personal battles with Hygiene.  Enjoy

Hello everyone, welcome to 2022 where anything is possible.  This is a solo podcast talking about how I've come to learn about what executive functions are and how they have impacted my life. I only learned what they were from googling them after hearing about it at a conference 5 years ago.  I talk about my personal perspectives and how I've learned to adapt to make my life easier.  I also talk passionately about how raising awareness for Klinefelter syndrome as a community can have a positive impact across the globe. That the next generations to come can have more people understanding what Klinefelter syndrome is.  Enjoy

Angela Fuller Heyde is the mother of Adam, who was diagnosed with Klinefelter syndrome. She talks about what it is like to go from being secret about her son's diagnosis to open and sharing information about her son on TikTok. She talks about her fears and how she knew opening up could give back and change other people's lives.  We hope she inspires you to build up the courage to give back and teach others about having an amazing son Living With XXY. 

Jacqueline Lightcap is the mother of a 17-year-old boy diagnosed with Klinefelter syndrome at 14. After a routine physical their family physician thought their son might have Klinefelter syndrome and recommended they see a pediatric endocrinologist.  She went to google when she found out her son possibly had Klinefelter syndrome to do some research in 2017. She said, "That can't be my son, it didn't describe him in a lot of ways."  Jacqueline and Ryan dive deep into how their son thinks and sees the world.  This is a wonderful podcast about boys in the middle school and high school age range.  

Koben Meausette is a 23-year-old man living in Victoria, British Colombia, Canada. He was diagnosed in utero with Mosaic Klinefelter syndrome and was told around the age of 13. Koben has hiked half of the Pacific Crest Trail. He has an extreme love for the outdoors and mother nature. Since his passion for camping, hiking, and adventure is deeply rooted, he makes his own packs with his sewing machine as a hobby. Koben shares his life story, his challenges, and how he was able to overcome them.  He just graduated from college and is looking forward to the next chapter of his life. You can see his adventure on Instagram @koben_meausette

Jared Pike is the Husband of Christin Pike who was on our show last week. Jared was diagnosed with Klinefelter syndrome after trying to build a family for many years. After Jared's doctor gave him the news using horrible bedside manner. Jared was very confused and went into a deep dark depression over the idea that he wasn't able to father biological children.  Jared talks about the rise to acceptance and enjoying life after diagnosis.  After multiple failed IUI sperm donor attempts, Jared and his wife found themselves interested in the foster care system.  They recently adopted a baby girl and are looking to build their family up in the near future  Jared is a special education teacher currently focusing on 4th, 5th, and 6th graders who need IEP's.  We look forward to having him back on the show to talk more about his job and how he can help other boys with XXY who are in special needs programs.  

Russell Martin is a 47-year-old man diagnosed with Mosaic Klinefelter syndrome 46XY/47XXY. He lives in Tampa, Florida with his wonderful wife and 2 biological sons.  Russell was diagnosed when he was 45 years old after he learned about possibly having Klinefelter syndrome at 13 years old.  Russell did lots of research on mosaic Klinefelter syndrome and he knew he had it despite the doctors he went to tell him otherwise. Russell was persistent in getting to the bottom of this and he eventually found out he was correct.  This podcast is a great podcast of Russell and Ryan talking about Klinefelter syndrome and what it's like to live with it.  

Shelby Herrle is the mother of 1-year-old Paxton who was diagnosed with Klinefelter syndrome 47 XXY at 3 months old. Shelby explains how her NIPT test said she was having a girl and her ultrasound tech then told her she was having a boy. After Paxton was born he had a rare bone infection in his foot that was missed by many ER visits and doctors.  One of the last doctors they saw wanted to do a karyotype to make sure they were not missing anything.  Paxton is meeting all of his milestones on time and is the happiest baby who smiles and laughs at everyone. 

Eli Bucksbaum is a 21-year-old college student living in Denver, Colorado. He was diagnosed with Klinefelter syndrome 47 XXY, right after he was born. Today in this episode, Eli talks about what it was like being told at 6 years old and about his life growing up.  Eli talks about how acceptance with having Klinefelter syndrome has helped him live a much happier life, not dwelling on what he cant do and focusing on what his possibilities are.  Despite learning disabilities growing up and troubles with language, reading, and spelling he is an art major, and currently is showing art in new york city.  You can find Eli's work on Instagram here: @eliabstracts

Daniel Hellinger is a 30-year-old man living in Seattle, Washington. Daniel has traveled the globe over his lifetime and has also been a part of peace core. Daniel found out about having Klinefelter syndrome when he was diagnosed at 24, right before he was going on a trip to India.  Dan talks about what life was like before and after his diagnosis and how testosterone replacement therapy has been a huge help to improve his life quality. You can find dan on Instagram @wanderwithdan

Gerald Maynard is a vibrant, fast-talking, social media savvy man living with Klinefelter Syndrome. He resides in St. George, Utah with his wife and mother, where he works as a youth leader and creates content for his widely-followed TikTok accounts. Gerald shared his story about learning about his diagnosis in adulthood, and what it’s like to live with 47XXY.

Jordan is a 29-year-old man living in Hughesville, Pennsylvania. While currently experiencing unemployment due to the COVID-19 pandemic, Jordan previously worked as an electrician’s helper with his uncle. Jordan is an outgoing man with short blond hair and a quick smile. He is very open about his diagnosis and ready to share about his life with Klinefelter Syndrome.

When he was a young boy, Drew knew what he wanted to do with his life. While most young people may not be sure of their path to a career, Drew knew he wanted to be a pilot in the Navy. With dogged determination, he began to forge his path with a single-minded ambition; to sit in the cockpit of an F-14 Tomcat. However, the journey to this goal took many unexpected twists, with a surprise diagnosis of Klinefelter Syndrome, changes in plans, heartbreak, and much self-discovery.

Josh Stanhope is the father of Noah (age 3) who was diagnosed prenatally with Klinefelter syndrome (47 XXY).  Josh talks about his journey of learning and understanding what a diagnosis of Klinefelter Syndrome meant.  

After Noah was born, Josh and his wife Chelsea and Josh told a few family members about the diagnosis. However, they regretted the decision when one day Josh’s father held Noah and said, "I can't believe something is wrong with you.” After hearing this, Josh and Chelsea felt alone with Noah's diagnosis, and they didn’t tell anyone else for a long time. 

Josh talks about how finding the community of Living with XXY helped ease their fears and better understand Klinefelter Syndrome. Now, the family is open with Noah and everyone else about the diagnosis. Being a part of the Living with XXY community has given them the support they needed to share their story with others.

Alex is a 34-year-old man with Klinefelter Syndrome living in Centennial, Colorado. He’s a gregarious, self-described ginger, with a bright smile, and infectious laugh. Having been raised in Colorado, Alex began looking for opportunities to expand his worldview after graduating from college. When he joined the Peace Corps, he was excited to be assigned to Rwanda, which is in East Africa. However, the experience wasn’t exactly what he was hoping for when Alex was struck by a series of mysterious, debilitating symptoms. Upon returning to the United States, he began a long, and at times confusing, journey to discover what was at the root of his health issues.

Anthony Prata is a 20-year-old who noticed he started to develop gynecomastia when he was in middle school.  Years later between the age of 16 and 17 he was diagnosed with Klinefelter syndrome after a routine checkup with the doctor.  His doctor noticed his testicle size was much smaller than kids his age and ordered a karyotype to confirm his diagnosis.  Now Anthony is 20 years old, and 3 weeks out of post opp for gynecomastia surgery.  We talk about what it was like going up with man boobs and how the surgery has given him a new perspective on life.  Anthony says "after every thunderstorm, there is a rainbow" and you have to keep on learning and enjoying life.   https://livingwithxxy.org/

Mike Christoff's behind the scenes interview from our first documentary series called "PERSISTENCE".  Mike talks about his life before his Klinefelter syndrome diagnosis and how it affected him afterward. He stated that he started to become the victim, and how it wasn't until his failed marriage he learned to change his perspective to focusing on the positive. 

Chelsea Castonguay is a mother with a 3-year-old son who has Klinefelter syndrome.  Noah was diagnosed in utero after Chelsea felt like something was off around 13 weeks and requested Noninvasive Prenatal Testing. Chelsea talks about how she was devastated learning her son would have Klinefelter syndrome 47 XXY.  After Noah was born she talks about how they were fearful about telling family. At a visit with a specialist, they were told to "never tell their son he had XXY". Confused about what they were told Chelsea talks about how this consultation leads to their decision to overcome fear and open up about Noah's diagnosis. Opening up created a network of support they never had.  Chelsea said she doesn't want anyone to feel alone and wants to support others just like those who supported her. Her Instagram: @easterneden

Angela Plaisance is the wife of Charlie Plaisance who was diagnosed with Klinefelter syndrome while trying to build a family together.  Angela talks about what it was like from a spouse's perspective upon receiving the news about her husband's diagnosis.   

In 2015, Niall started researching to find out why he had smaller testicles. After further investigation Niall was certain he had Klinefelter syndrome. When reading information about the possibility of infertility, he was gutted and stopped all research. In 2018 Niall's girlfriend Isabel pushed him to go get tested when he told her about the possibility he might not be able to have children.  Niall and Isabel share their story about his diagnosis and life after. Niall and Isabel want others to know everything will be ok, to not let what you read online pull you down straight away.  To stay positive, and know there is nothing you cant achieve in life. Thru their personal experience to not ignore it or avoid it and reach out for support.  

Brandon age 36 found out about his diagnosis at the time of his engagement at 32 years old.  He had a work-related accident that gave him a hernia.  After the ultrasound tech noticed he had smaller testicles, he went thru testing to find out he had XXY.  Brandon talks about how he just feels like any other guy out there and how XXY has not held him back from living life.  They talk about their quest to enjoy life and adopt children when and if that time comes for them.  Danae offers some insight from a spouse's perspective.  This is our first couple on the show and we look forward to having many more.   

Dan Mooney was diagnosed with Klinefelter syndrome at the age of 19 when he had a hernia and his doctors noticed his testicle size was really small. After diagnosis and due to lack of information Dan continued to live his life.  At the age of 38, he realized his testosterone was under 200 and started injections once a week in his legs.  Dan talks about how testosterone has helped him with his mental health and being able to build muscle.  He resides in Oregon where he is a full-time graphic designer and runs his own marketing company.

https://www.mooney-marketing.com/

Instagram: mooneyinredmond

In our final episode of season 1, Carson talks about her son LJ and everything she had to do to get her son early intervention. Which would eventually lead to a Klinefelter syndrome/47 XXY diagnosis.  Carson started to notice her son's gross motor skill delay at 4 months and at 10 months old he had the gross motor skills of a 5-month-old. LJ just reached a huge milestone at 18 months on the day of this podcast recording. Carson talks in-depth about advocacy, awareness, and the reason she is speaking up about LJ's diagnosis.  

Here we have Brett Jones and his mother April Jones talking to us about what it was like for Brett to get diagnosed in High School with Klinefelter syndrome.  April knew something was up when Brett was in the first grade.  She fought over the years and never gave up.  At 17 Brett was diagnosed with Klinefelter syndrome and after his 1st and 2nd shot of testosterone, his mom says "I finally got to meet my son, he was smiling, laughing and learning to enjoy life".  After many years of struggles, Brett started a career in welding and is now part of the union working in a government nuclear facility.  

Richard who was diagnosed with Klinefelter syndrome at the age of 16 is now 71 years old living an incredible life in the Pacific Northwest.  Richard started his career as a teenager delivering newspapers and working the night shift of a cleanup crew.  After graduating from a university with a degree in business he worked his way up the corporate ladder to become a member of the board of directors of a large company as well as their CFO.  He quit at the age of 52 to enjoy his life and concentrate on his fondness of stock investing and consulting.    Richard is the oldest person living with Klinefelter syndrome that Ryan has met to this day.   Richard and his spouse enjoy reading and international travel in their spare time. Being an avid investor Richard is proficient with technology and building spreadsheets to manage investments.  You can support our nonprofit organization at www.Livingwithxxy.org

Cresta is the mother of Cole who is 2 years old and was diagnosed with Klinefelter syndrome thru a NIPT (noninvasive prenatal testing).  Cresta has some incredible things to share about her pregnancy and has decided to change her career path to become a genetic counselor.  She wants to be able to provide more accurate information for our community and also provide more helpful information for her son. This is a podcast you do not want to miss!  www.livingwithxxy.org

Angela and David Heyde were blessed with a son 14 months ago.  Angela was 42 years old when her son Adam was born. They talk about receiving their sons Klinefelter syndrome diagnosis through a NIPT or (Non-Invasive Prenatal Testing). When faced with overwhelming emotions and their doctor knowing nothing about Klinefelter syndrome, they went to google looking for answers, only to find negative and outdated information.  They talk about overcoming the challenges they were faced, and Adams's bright future.  www.livingwithxxy.org 

Mike Christoff found out he had Klinefelter syndrome at 27 when he was trying to have kids with his first wife.  Mike has a BS in graphic design and works as a UX designer.   He loves to get outside into the wilderness where he lives in Utah, take photos, go hiking, and enjoy spontaneous exploring.  We recommend everyone who listens to this podcast who wants to better understand Klinefelter syndrome.   Mikes social media can be found here: @mikemantx @redaardvark_design 

Andrew was diagnosed with Klinefelter syndrome at the age of 16 after waking up one morning saying his testicles were hurting. A trip to the urologist and several doctor visits later he found out why.  He talks about what it was like to be diagnosed, being developmentally behind his peers, and how he caught up with life at 22.  He is actively involved with raising awareness online and getting his bachelor's degree in cybersecurity.  

Ryan Bregante shares what it was like growing up and going through grade school and middle school.   From bulling to believing in himself and self-advocating.  He also talks about how he got started raising awareness for Klinefelter syndrome and forming a non-profit organization to better help this amazing community come together to break down stigmas created by out of date information.