Episodes
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...
Published 03/19/24
Published 03/19/24
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.
Published 03/07/24
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...
Published 01/09/24
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.
Published 12/26/23
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,...
Published 12/12/23
Colleen Sander's son, Jackson, was born at 29 weeks and wasn't speaking at the age of two. Once Jackson started school, he was given speech therapy, and over time, something didn't seem right for Colleen. Jackson, 14, had some routine blood work done a few days before receiving a strange phone call from the NHS on a Sunday evening around 9 p.m. The doctors asked for him to come back and do some follow-up testing. Colleen jumped on Google to research what the results might have meant. She...
Published 11/28/23
Jessica Henderson's journey to diagnosis started with her firstborn son, Clay, who is now 18. When Clay was two, Jessica's Grandmother offered to pay for speech therapy. School started to become challenging for Clay in the third grade. One of the teachers told Jessica at a parent-teacher conference, "I've just learned to expect less from your son".
Published 11/14/23
Michael Bush is the father to Carson, an 18-year-old diagnosed with XXY at 15, and together, they want to inspire other young men and their parents to do a podcast. Carson shares his story, from being unable to talk about XXY to his love of teaching people about it. At the age of three, Carson hit his peak in growth, and by the time he was five, he started taking growth hormones. Around 12, Carson was experiencing mobility issues, and their family doctor thought he might have Heller and...
Published 10/31/23
Carolina is the first person from Brazil to share her story on our podcast. She was 35 when she was pregnant so her OBGYN was concerned due to her older age. She asked her to proceed with doing an NIPT. After the results came in, her doctor called her and said she was having a boy with XXY. The doctor also told her his life would be fine, and that he might have troubles with fertility. Her son is also a rainbow baby, which seems very common among our XXYcommunity.
Published 10/17/23
Melvin Amantiad was born and raised in Hawaii. When Melvin was in his early 20s (1980s for reference), he went in for a check-up for prostate cancer because he was having pain in his growing/stomach area. Because of his body shape, his doctor suggested doing a karyotype test. The test results came back positive for XXY. He was given a pamphlet from the doctor and sent on his way. His doctors scared him with the idea of being put on hormone treatment that it would make him very aggressive and...
Published 10/03/23
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.  
Published 09/19/23
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
Published 09/04/23
#101 - Parents of Boy with XXY - Amanda and Jonathan Korb
Published 08/29/23
#100 - Adult with XXY - Daniel Sharp
Published 08/22/23
#99 - Adult with XXY - Nick Rodriguez
Published 08/15/23
#98 - Parents of Boy with XXY - Mariah and Romone
Published 08/08/23
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."
Published 08/01/23
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.
Published 07/25/23
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...
Published 07/18/23
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.
Published 07/13/23
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,...
Published 07/10/23
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.
Published 06/14/23
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...
Published 06/12/23
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.
Published 06/07/23