Paul Anthony – Police Officer and Family Man


By Paul Anthony

My name is Paul Anthony. I’m 35 years old. I’m a husband, a father and a police officer.  I love my life and I love my career but it was a long challenging journey to become the man I am today. Here’s my story.

I was born on February 2nd 1988 in Brooklyn, NY. My mom was just 21 years old when I was born and my father was MIA. I was born with a condition called Bladder Exstrophy which caused my bladder to be outside of my body when I was born.  There is no known cause for this birth defect and it happens to about 1 in every 45,000 births.  I have been through 21 surgeries and over 100 procedures. There were many ups and downs throughout my life and sometimes I felt like the fight was hopeless, other times I felt like a warrior who was built for battle. While growing up I often felt like I was cursed with a condition that I did not have much control over but as I got older I realized I was also blessed, I had a huge support system. I had a mom that was by my side for every single doctor’s visit and surgery, I had 2 brothers, Dom and Joey that were there for me my entire childhood and never let me use my condition as a crutch to not play a sport or try something challenging, including getting beat up by dom, who happens to be younger than me. i ‘ still convinced he was lucky every time he beat me… all 728 times. I had a large number of cousins who were just as supportive as well as a stepfather who was there for me in his own special way. I also had a handful of aunts, an amazing uncle and a grandmother who all helped raise me.  My grandmother was my absolute guardian angel who made me feel like anything was possible. This support system never let me down and they gave me everything I needed to overcome every challenge of growing up with exstrophy, including a bit of tough love which I definitely needed growing up. Considering some of the more severe cases of bladder exstrophy i was on the lesser end of the spectrum in regards to complications and effects on my body.

Camryn Young – This New Chapter


Hello, my name is Camryn Young, I am 23 years old, and I was born with Bladder Exstrophy (BE). Being born with Bladder Exstrophy has granted me a handful of opportunities which I am beyond thankful for — but, to be honest, I did not always feel this way. Today, I am ready to share my story, and help to inspire others who may have or are currently experiencing the same journey I have.

Priyanka Kallur – Overcoming Mental Boundaries


By Priyanka Kallur Whenever someone asks me about my life, I never know quite what to say. For many years and even sometimes today, I don’t think of myself as anything but ordinary. However, I am reminded frequently by friends and family of how unique my life truly is. I was born in a small hospital in the suburban area of Bangalore, Karnataka, India on Shivarathri night, an important religious holiday, dedicated to the Hindu god Shiva. My life started off pretty much the same as any other baby. My mom went into labor two months early with me, and had me via cesarian section, something about amniotic fluid levels being too low. At the time of my birth doctors were prepared for a premature baby, but nobody was expecting me to be born with so many health conditions. At my birth, in addition to being premature (I was 4 pounds at birth), I was born with a rare condition called Cloacal Exstrophy/OEIS syndrome, something the doctors who delivered were not prepared to treat. Nobody up to that point had even detected my condition before, something that can be detected very early during ultrasound today. I needed multiple surgeries and a specialized incubator in a NICU, something that was not in the hospital I was born in. I also had a very high body pH at birth that they were struggling to get under control. Unable, to treat me in the small hospital, doctors told my family to take me to St. John’s hospital, at the time, one of the only specialty hospitals in the city. At barely hours old, I was loaded with my uncle into an autorickshaw, headed to St. John’s hospital, leaving my mother behind. At St. John’s hospital I was very much fortunate, that they had a pediatric surgeon who had seen my condition before and knew how to treat me. Despite having experience treating my condition, it was not an easy task. I was born with my bladder and colon connected and on the surface of my body with no skin. My pelvis was not joined together, no proper abdominal wall, and no vagina, urethra, or rectum. I also had spina bifida, sacral agenesis and mild scoliosis in my lumbar spine. It was a miracle that I survived that night, and I had multiple unsuccessful surgeries before they were able to properly stabilize me. I had to be operated on multiple times in just the first few days of my life.

Cory Conacher


MIRACLE, BABY making the NHL with Type 1 Diabetes | Bladder Exstrophy l Cory Conacher The ultra competitive world of professional sports is daunting for any athletic hopeful, let alone Tampa Bay Lightning forward Cory Conacher. As we explore the young hockey star’s journey to the NHL, we discover that dealing with type 1 diabetes…

Paul Young – I’m Going to Talk About Me


Note: Paul Young wrote about his experiences for The Urological Foundation in the United Kingdom Paul Young is an award winning stand up comedian and writer who has written for shows including Top Gear, Miranda, and Not Going Out. He works under the stage name of Paul Kerensa. I’m Going to Talk About Me By Paul Young…

Kaitlin Morris – Finding Bravery in Unexpected Places


Note: I first met Kaitlin, when I came to Sydney, New South Wales, Australia to speak at the 2010 BEECH Australian Community Conference in June, 2010 – Thomas Exler YouTube: Mrs. Morris  Finding Bravery in Unexpected Places By Kaitlin Morris Hi there, I am Kaitlin (Sheedy) Morris,  I was born on April 15, 1992 with classic…

2018 Courage to Shine™ – Thomas McKeon Ludlow – June 9, 2018


13-Year-Old Tommy Ludlow Receives Courage To Shine™ Award Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient to hike to Mt. Everest Base Camp. The 12-day…

Emily Kohlman – Turning Scars Into Beauty Marks


Note: In 2014 Emily wrote a blog for Courage to Shine™ the following is  an update to that blog from 2014 with can be found here:  Emily Broeren Kohlman – My Journey!!! Turning Scars Into Beauty Marks By Emily Kohlman My husband and I met at four years old at Johns Hopkins Hospital in Baltimore, Maryland, scheduled to…

Kylee Hunter Morgan – You Can Call Me “Smiley Kylee”


You Can Call Me “Smiley Kylee”  By Kylee Hunter You know your life will be interesting when one of the first words out of the doctor’s mouth at your birth is, “I think that’s a bladder”. My name is Kylee Hunter, I’m almost 18, and I was born with bladder exstrophy, a rare birth defect that…

The 2019 B.E.S.T. (Bladder Exstrophy Support Team) Campout


Friday, August 2 – Sunday, August 4, 2019 Location: Campground By The Lake, South Lake Tahoe, CA, USA Address: 1150 Rufus Allen Blvd, South Lake Tahoe, CA 96150, USA IF you’d like to stay in a hotel, accommodations are close by.  Hotel Azure Tahoe  – This hotel is very nice and it’s almost across the street from the…

2019 A-BE-C Great Lakes Chapter 11th Annual Summer Campout


2019 A-BE-C Great Lakes Chapter 11th Annual Summer Campout Friday, July 26 to Sunday, July 28, 2019 – You are invited to join us for a weekend campout with families dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias.  This is a great way to connect with other families, share in similar experiences and know…

Jon Pierroz – Adversity to Triumph


Jon Pierroz – Adversity to Triumph   Jon Pierroz interview by Courage to Shine™ and he just got married this month. Classic Bladder Exstrophy Email to Jon: Jon@courage-to-shine.org Please read Courage-to-Shine.org disclaimer!                    

Mindi Plumley Thayer – Triumphing Over Exstrophy


Triumphing Over Exstrophy By Mindi Plumley Thayer I was born on April 17, 1982 at 3:43 pm. I was the first child of two for my parents Dale and Nina Plumley. At birth the doctors thought I had a hernia. When they went in to repair the hernia they discovered that I had classic bladder exstrophy….

Rachel Fisher Althizer – Turning Fear Into Confidence


Turning Fear Into Confidence By Rachel Fisher, My name is Rachel Fisher, I’m 23 years old and I was born with classic bladder exstrophy.  My life began in New Bern, North Carolina in 1992.  My medical experience started with an immediate closure, reclosure and bladder neck reconstruction.  Unfortunately, at age four I developed blockages in…

Jessica Sanchez – Embracing Bladder Exstrophy


My name is Jessica Sanchez.  I am 26 years old, born and raised in Washington State and I was born with classic bladder exstrophy.  But bladder exstrophy is not who I am, it’s just a part of me.  I am a daughter, a sister, a mother, a wife, a teacher, and a Christian.   I love to dance, lead worship at my church, have family game nights, and watch my daughter grow. My experiences with bladder exstrophy have been both hard and rewarding.  What may have seemed like a hardship at the beginning of my life; turned into a beautiful journey that I wouldn’t change for the world.

2016 International Exstrophy Conference In Oklahoma City, OK, USA


Friday July 8 – Sunday July 10, 2016 Save the dates: July 8-10, 2016! Plan to join the A-BE-C community of families and health care providers for three days in Oklahoma City this coming July! The 2016 event is hosted by A-BE-C in partnership with the University of Oklahoma Children’s Physicians. Venue Details coming soon Oklahoma City, OK United…

The 2016 B.E.S.T. (Bladder Exstrophy Support Team) Campout


Friday August 5 to Sunday August  7, 2016 Location: Campground By The Lake, South Lake Tahoe, CA, USA Address: 1150 Rufus Allen Blvd, South Lake Tahoe, CA 96150, USA IF you’d like to stay in a hotel, accommodations are close by.  Inn by the Lake – This hotel is very nice and it’s almost across the street…