Explore every episode of the podcast Livingwithxxy

Ryan is the president and founder of California-based non-profit Living with XXY. Ryan is a 37-year-old with Klinefelter syndrome or 47, XXY. Klinefelter syndrome results from an extra X chromosome, affecting roughly 1 in 500 males. Ryan’s parents learned about his XXY diagnosis during his mother’s pregnancy. His experiences navigating XXY and those of the over 600 families he’s met help guide and inspire Ryan's work today.

While Ryan’s background includes work as a fine dining chef and action sports photographer, he currently spends most of his time advocating for his community through his non-profit. Living with XXY was officially established in 2019 and focuses on creating a community, spreading awareness, and sharing positive traits for those with an XXY diagnosis. Living with XXY is growing daily, reaching over 40 countries.

Ryan is traveling around the US, meeting with clinics, professors/students, other professionals, and families to share the work of Living with XXY and create opportunities for connection for those with XXY.

Brittany is the mother of a 4 1/2-year-old boy named Callan. Their son was experiencing bloody noses at a young age. After a week in the hospital, Callan was diagnosed with Aplastic anemia, which is a rare but serious blood condition that occurs when your bone marrow cannot make enough new blood cells for your body to work. At the same time, he was also diagnosed with Klinefelter syndrome.

Tara Whitfield shares her story about her son Westin. Her first pregnancy ended in a miscarriage. When Tara was ten weeks pregnant, she opted for NIPT. Being a nurse, when the results came back positive for XXY, she had never heard of it. Tara has listened to every single podcast, and it has been a light for her in dark times during her diagnosis. She hopes that her story will encourage others to share their stories.  

The mother of a two-year-old boy shares her recent shift in managing her son's early intervention and her family's overall approach to raising their son with Klinefelter syndrome. www.livingwithxxy.org

The father of a two-year-old boy shares his recent journey of fully accepting and embracing his son's unique personality & interests. He opens up about how his lifelong thoughts about fatherhood limited his relationship with his son. He learned to embrace his son having Klinefelter syndrome. 

www.livingwithxxy.org

Stefan was diagnosed with Mosaic Klinefelter syndrome in 1996 at 26 years old.  He has been a strong advocate since his diagnosis and has attended many conferences over the years meeting a wide range of people with Klinefelter syndrome and all different age groups.  We are glad to have him on the show.  Here is his website.  You can also contact Stefan on Facebook.

This episode is all about nature, free play, and how it has helped Kat's son Leo who is three years old and has XXY.   I began thinking over our journey and our introduction to Free Forest School. Free Forest School is an international organization where children and caregivers meet in nature with no toys for unstructured and child-led play.  https://www.freeforestschool.org/ https://livingwithxxy.org/

Living with xxy is a Nonprofit 501.c.3 Charitable Organization raising awareness about Klinefelter syndrome - 47 xxy.  We are here to help people all over the world learn more about this condition. By listening to our podcast you will hear voices of our community share their personal stories about overcoming challenges they faced and rising above the outdated information.  More information can be found on our website.   https://livingwithxxy.org/

Evan Flores was born and raised in NYC his entire life. He never left and met his amazing wife Sabrina on August 19th, 2010 After 3 to 4 years of trying to have a family, Evan and Sabrina decided to go in for testing to see why nothing was working. After testing, Evan was diagnosed with Klinefelter syndrome and was in utter shock. “How is it even possible for someone to have an extra chromosome,” he said.

Evan and Sabrina did Micro TESE and IVF in the same go and he is blessed with a miracle baby boy named Joshua. Joshua is 7 months old and thriving and Evan is his biological father.

Since Evan was born in NYC he understands that having a hustle is part of life. Selling cable door to door as his full-time job, Evan also is the owner of a clothing company inspired by God called Saved. You can feel his love for vintage clothing when he talks so passionately about it. Evans work can be found www.savedco.com

Geoff Kruck 42 years old, lives just north of Melbourne, Australia. Geoff found out the hard way he had Klinefelter syndrome. When he got married to his wife, he didn’t have an overbearing desire to have children.  Geoff was just thrilled he was marrying his best friend.  He thought starting a family would come naturally down the road.  Geoff says "you just assume it’s going to happen for you when you’re ready."   Geoff was featured in Healthy Male Australia.  Living with XXY is a Nonprofit Charitable Organization

Richard and Rosalie Bregante share information on what it was like to raise their son, who was born in 1985 when information for Klinefelter syndrome was very limited.  https://livingwithxxy.org/

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.  

Toby Voige, age 15, shares his experience from his recent trip to Denver, Colorado, while participating in research. The Lipids to Fat study aims to see how boys with XXY bodies use fat as an energy source. Dr Shanlee Davis is the lead on this research. If you would like to learn more, please click the link provided and watch the video. Details about the study are in the video description https://www.youtube.com/watch?v=Mub4Mx6TkOk

Taking you all back to freshman year of high school as if it was yesterday.  Some key talking points are about being in an English class with 4 Japanese students, myself, and a teacher.  Also how I coped with bullying due to being a slow reader.  Playing sports freshman year and attending homecoming.  I hope you are able to learn more about my story and journey with Klinefelter syndrome.  https://livingwithxxy.org/

What it was like for Kelsey to be diagnosed with Klinefelter syndrome at 27 years old while trying to build a family. Kelsey talks about when doctors told him he would not be able to have kids, that he wasn't going to let that stop him.  Even with the unknowns, emotions and anxiety Kelsey overcame the challenges of infertility using donor sperm with his wife.  Today they have two amazing and beautiful children who are 11 and 8 years old.  https://livingwithxxy.org/  Book mentioned by Kelsey https://www.amazon.com/Pea-that-was-Me-Donation/dp/1481157140/ref=sr_1_2?dchild=1&keywords=the+pea+that+was+me&qid=1588119366&sr=8-2

We welcome you to join and subscribe to our brand new podcast series for Klinefelter syndrome awareness.  This is our introduction to what the podcast will be all about and how we will grow over time.  This podcast gives the voices of our community a chance to share the spotlight.  We look forward to having you.  Www.livingwithxxy.org 

Amanda found out she was pregnant in 2020. Having a background in the OBGYN field, they did an NIPT because they wanted to know the gender of their child. Amanda went online to her medical account to find the test results were completed before her doctor could call her. She saw the results said male, but it was also flagged as XXY. Her doctor's office didn't know much about the diagnosis and referred them to a genetic counselor who said, "if your baby is going to be diagnosed with anything, this is the one you want."

Daniel Sharp was overweight at 24 and went to the doctor to see if they had any answers to why. The doctor talked to Daniel about having low vitamin D levels and lower testosterone. She suspected he had Klinefelter syndrome, but no further testing was done to confirm. After meeting his first wife, they tried to have a baby for two years, with no results. He did a sperm test and found out he had zero sperm. The doctors attributed his no sperm to him being overweight. His first wife divorced him because he was unable to have kids.

Nick Rodriguez has had his own contracting business since the start of the pandemic. He plays semi-professional football as an offensive tackle, and his team won the state championship. When Nick was 14, while playing football, he couldn't build muscle like his gym peers. His freshman year's max on bench press was 95 pounds, weighing 215 pounds at 6'4". His mother took him to the doctor, knowing he could not build muscle, and the testing began. Later, Nick found out he was diagnosed with Klinefelter syndrome/47XXY.

Mariah, 25, and Romone, 27, learned about Klinefelter syndrome at their 20-week appointment after their results from NIPT testing. They opted out of doing an amnio and waited till birth to confirm. When they learned about the diagnosis over the phone, being on Google while the nurse told them about the diagnosis was horrifying. The nurse tried to comfort them by saying its most likely a false positive.

Deepak's family is originally from India. He was born in Brooklyn and raised in West Texas. At age 28, he and his wife started trying to have kids. After visiting over 14 doctors, many told him he didn't fit the stereotype of having Klinefelter syndrome. At 43, he's decided to share his story to make a difference. He says, "It's been a journey."

Grace Hatton is the mother to four beautiful children. She received Non-invasive prenatal testing (NIPT) with her youngest son. After a personal phone call revealing the diagnosis from her doctor, they both were excited. She felt a sense of calm and comfort in her son's XXY diagnosis and knew she could handle it.

Welcome to our first-ever father-and-son podcast!

Michael Bouley is a fantastic dad to Hunter Bouley, age 21. Hunter was born with club foot affecting one leg, which led the doctors to think something else was happening. Around puberty, Hunter was diagnosed with XXY, and things started to make sense as to why he struggled in school with comprehension, math, and physical development.

In the 7th grade, he went from homeschooling to public school for the first time. Despite being bullied for looking different over time, it taught Hunter to focus on his goals regardless of the setbacks he faced. Hunter has worked hard his entire life to overcome his challenges.

His Instagram shows a well-defined muscular man who has devoted his life to nutrition and working out. He drives a forklift at a lumber yard using his visual memory while working with his hands. He loves hanging out with his family and large-mouth bass fishing.

Despite having trouble with expressive language, Hunter knew sharing his story would help others know they are not alone.

Hunters Instagram: @hunters.fp

Toby joined track and field at his local high school. Nervous for his first race, Gareth found out and sent his mother this incredible pick me up voice message. This is what supporting eachother is all about and why being open about having XXY is so important. Positive support from our peers is another thing that makes this community incredible.

Kelly Stine is the mother to Connor, who is 17, a senior in high school. Connor encourages other boys his age to share their stories and help build a community for teenagers with XXY. Connor loves to play Roblox and Brawlstars. He also enjoys his government class because his teacher is super funny. At the end of 10th grade, she noticed his maturity was not developing like others. After some blood work, Kelly noticed his FSH levels were off the charts. She started to learn about Klinefelter syndrome and asked her doctor to do a Karyotype. Once he was diagnosed, they did Micro-Tese which came back negative. Kelly says "starting testosterone has been a night-and-day difference for Connor."

Surprise! It’s a boy! It was a huge surprise and blessing when Allison discovered she was pregnant at 36. After spending much of her adult life not thinking she would have children naturally, she had all but thought that a child of her own would not be a part of her life journey. But then came Theodore, a beautiful and healthy baby boy born with a unique chromosomal variation, XXY.

Allison, now 38, and Theodore, now 20 months, want to share their journey through NIPT testing, diagnosis, early hormone intervention, and meeting with a team of specialists to help other parents curious about what that first year of life can look like for parents of a child with XXY, and to ease some of the stress around the unknowns.

“At the end of the day, Theo is just like any other kid, and it’s up to me, as his parent, to set him up for success and to support him in his journey so he knows that no matter what challenges and obstacles he may face, he has a team of people behind him and cheering for him. I want him to grow up and be proud of who he is, and I wanted to share his story because I know that somewhere, someone needs to hear it and know that everything will be okay.” Allison's Instagram: @abpatrick

In July of 2020, Antoni Strzelecki, who is from Australia, discovered he had azoospermia. The doctors ordered more testing, and he later found out he had Klinefelter syndrome. After two years of trying to learn and process who he is, he has decided to share his story to help other men like him not feel alone with this diagnosis.

Russell Martin is the first person we know to be able to have kids without medical interventions. After his two boys were all grown up, Russell was diagnosed with mosaic Klinefelter syndrome in his mid 40's.  

After extensive research on mosaic XXY, even after his doctors told him there was no way he could have XXY, a karyotype test years later revealed he did.   What is Mosaic Klinefelter syndrome?  Klinefelter mosaics (47, XXY/46, XY) are less severely affected, and the chance of finding sperm in the ejaculate in these males is significantly higher than in nonmosaic (47, XXY) cases.  https://livingwithxxy.org/

Saxxon Firestone was diagnosed with Klinefelter syndrome back in 2014 at the age of 24. After experiencing pain in his growing. An ultrasound was ordered and a visit to the urologist confirmed he had XXY.

Scott Stapley got married in 2013, and two years later, after trying for kids, he and his wife realized they needed to get tested. After a sperm sample yielded nothing, Scott went to a urologist who recommended genetic testing. Finding out he had Klinefelter syndrome; he tried Micro-Tese surgery shortly after.

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/

Charlie Plaisance got married when he was 27 and felt old enough to start trying for kids immediately. After trying for some time, he and his wife decided to get testing done. After giving a sperm sample, charlie learned he had three immobile sperm and later found out he would be diagnosed with Klinefelter syndrome (47 XXY).  Charlie and his wife ended up trying Micro-Tese and IVF, which was a success.  They are three amazing and unique kids and their family is complete for now. www.livingwithxxy.org

Carson Blake shares with us about her son Louden, who is now four years old and has been in Early Intervention since he was six months old. Carson talks about why EI has been super helpful for her son and his accomplishments. Carson also got her state of Missouri to add Klinefelter syndrome to the First Steps Early Intervention system for infants and toddlers, birth to age three, who have delayed development or diagnosed conditions associated with developmental disabilities.

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.  

Jennifer Fritz Voige is the mother of a teenager named Toby, a freshman at a big new high school.  Jennifer talks about her personal experience advocating for her son's needs.  www.livingwithxxy.org

Ted Clark was concerned about the size of his testicles when his girlfriend, a nurse, said they appeared smaller. Going to the doctor with his concerns, his doctor said there might be a tumor in his brain suppressing the growth. After ruling that out, more testing was ordered, and Ted discovered he has Mosaic Klinefelter syndrome (47 XXY). Ted shares the details of his fertility journey. After a successful Micro-Tese and IVF, he now has a beautiful daughter.  www.livingwithxxy.org

Richard Martinez jumps right into sharing the details about his life while trying to have kids with his wife.  Many questions came up on why nothing was happening.  After a diagnosis of Klinefelter syndrome (47 XXY), Richard and his wife went with donor sperm.  Richard shares his personal experience about his diagnosis and why sharing your story matters. They have two twin girls. www.livingwithxxy.org

Matt Dalley is 25 years old and living in Provo, Utah.  After getting married at 21, Matt and his wife Katie wanted to be young parents.  A year of trying with no luck led the doctors to start testing his wife. Matt ended up going to the doctor with a varicose vein in his scrotum, which led him to a sperm test.  Ultimately finding out that he had Klinefelter syndrome.  www.livingwithxxy.org

Ryan Turesson is from Brisbane, Australia. In 2007, he was trying for kids with his partner. Nothing was happening, so she went in for fertility testing. Her tests returned, saying nothing was wrong. So Ryan went in for testing and later found out he had Klinefelter syndrome. Learning he was sterile and couldn't have kids was devastating, sending him into a dark depression. They decided to do donor sperm since adoption in Australia is extremely difficult.  Ryan is now a father to two unique and wonderful boys. www.livingwithxxy.org

Yvette Maano is the mother of a young boy named Sammy. During her pregnancy, she was flagged for her baby boy having Klinefelter syndrome.  After her diagnosis, her doctor handed her outdated information and asked if she wanted an abortion.  After she declined, her doctor asked her if she was sure about her decision which left her feeling frustrated that she wasn't making a good decision.  www.livingwithxxy.org

Ariel Ze'evi might be the first man to share his story openly with the world from Israel. Ariel was diagnosed with Klinefelter syndrome while trying to create a family with his wife. He hid his diagnosis from family and friends for many years.  After a successful Micro-Tese surgery and two beautiful boys, Ariel speaks out to break the stigma.  He hopes that sharing his story will inspire others to come forward in his country, to create community, and save baby boys from termination.  Www.livingwithxxy.org

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.

Jake Gray, at the age of 25, found out about his XXY diagnosis while his wife was being tested for some health concerns. The doctor wanted to try Jake for fertility since his wife was flagged for FMA.  At 25, he was in shock and denial about his diagnosis.  Now 27, Jake is a new father to a baby boy after choosing to use donor sperm.  Jake dives deep into the process, emotional stresses, and costs of using a donor. Jakes's Biography can be found Here. 

Anne Price had an NIPT screening due to her age of 41. One week later, while their family was on vacation with their two older kids, Anne received a call while waiting for the Finding Nemo ride at Epcot. Her phone rang. Her OBGYN, who had a very somber tone of voice, delivered the news horribly, telling her the results were a sex chromosome abnormality and the mention of Klinefelter syndrome. He said, "The good news is that your child doesn't have Down syndrome." The call got disconnected, and Anne couldn't leave the line, so she started to cry uncontrollably during the ride.

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.