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.

2019 International Exstrophy Conference in Los Angeles, California, USA


2019 International Exstrophy Conference in Los Angeles, California, USA Save the dates now! The 2019 International Exstrophy Conference will be at the Children’s Hospital Los Angeles on Friday, June, 28 through Sunday, June 30, 2018. More details to be announced in the coming months. Website: The Association for The Bladder Exstrophy – 2019 International Exstrophy Conference  More details…

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…

Matt Elkins – Angling over Adversity


Angling over Adversity By Matt Elkins My name is Matt Elkins; I’m 40 years old; I’m married; I live in Spencerville, Ohio; I’m an environmental specialist by trade; and I have a passion for hunting and tournament bass fishing. That pretty much sums me up in as few words as possible. What is missing from…

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…

Courage to Shine™ – Tour III – Spain – November 2012


Courage to Shine™ – Tour III – Spain – ASEXVE Medical Conference, Avila, Spain – November 23-25, 2012 News Release: Courage to Shine™ Team to Attend ASEXVE Medical Conference in Avila, Spain from November 23 –25, 2012 In early 2012, Thomas Exler and Mist Blue Foster were invited to attend and to speak at the ASEXVE (Asociación española…

12th Annual California Bladder Exstrophy Support Team Campout – August 3 – 5, 2012


12th Annual California Bladder Exstrophy Support Team Campout Friday August 3 – Sunday August 5, 2012 Campground by the Lake, South Lake Tahoe, California, USA By Thomas Exler This past August 3-5  2012, 15-20 families living with bladder exstrophy, came  together  in South Lake Tahoe, California, for the 12th Annual California Bladder Exstrophy Support Team (B.E.S.T.)…

4th Annual ABC Great Lakes Chapter Campout – July 20-22, 2012


4th Annual ABC Great Lakes Chapter Campout Friday July 20 – Sunday July 22, 2012 Eby’s Pines RV Park & Campground, Bristol, Indiana, USA In late July 2012, Alice Ambrose of Michigan, along with her husband Brad Ambrose were honored to again be the hosts for the 4th Annual ABC Great Lakes Chapter Campout, at Eby’s…

Misty Blue Foster & Jamie Holmes Featured in eBook Honoring the Best of UroMed Hometown Heroes


Misty Blue Foster and Jamie Holmes, two of Courage to Shine Role Models of the Month, have had their stories published by UroMed Hometown Heroes Blogg converted along with 14 others into eBook: Courage: Stories of Hometown Heroes which can be purchased on Amazon.com at  http://www.amazon.com/Courage-Stories-Hometown-Heroes-ebook/dp/B007WU2RX4/ref=sr_1_1?ie=UTF8&qid=1335785891&sr=8-1 UroMed Launches E-book on Hometown Heroes Overcoming Disabilities MAY 2, 2012 LEAVE A…