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.

Jenny Jones – Life’s a Polyp


I’m Jenny and my medical story started when I was about age 8. I had been experiencing chronic abdominal pain for a while. My parents knew there was a chance I had inherited the rare disease Familial Adenomatous Polyposis (FAP) from my mother and perhaps this is what was causing my abdominal pain. They began their efforts to have me evaluated by a GI specialist but would encounter barriers placed by their HMO insurance. A referral to a specialist was required by a primary care doctor. However, my PCP dismissed my pain and told my parents I was “just whiny”. For me to be seen by a GI specialist, my parents decided to change to a PPO insurance plan as soon as possible so that we would never require a referral again to be seen by a specialist

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…

Damon Little


Damon Little Damon Little is a National Gospel and Grammy Winner Artist, I (Thomas Exler) ran into his at the United Ostomy Associations Conference.  During his childhood he has many surgeries and live with a colostomy for years. Damon Little: http://www.damonlittle.com/ Damon Little / Be Alright-2019:  Courage To Shine™, Turning Adversity to Triumph, Courage to…

2016 Courage To Shine ™ – Brittney Freeman – July 9 2016


Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here 2016 Courage to Shine™ Lisha Martinez & Adam Young Award . Brittney Freeman was presented with the 2016 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday July 9 2016. Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here Brittney Nichole Freeman is…

Emily Broeren Kohlman – My Journey!!!


By Emily Broeren First and foremost, my name is Emily Rose Broeren.  I am 23 years old, 5 foot 4, and have blonde hair and blue eyes.  I was born and raised in Kaukauna, Wisconsin, but now live in Massillon, Ohio.  My family means a great deal to me and are some of the most…

Kiersten Kelly – An Angel’s voice overcoming adversity – Part 1 of 2


Editor’s Note: I (Thomas Exler) had the pleasure of meeting Kiersten Kelly at a fundraiser for Jamie’s Dream Team on March 23, 2013, and I was so impressed with her, not only the way she presented herself, but also in her vocal talent, so please sit back and enjoy this amazing story from an international YouTube sensation…

World Rare Disease Day – February 28, 2013


The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA. – WORLD RARE DISEASE DAY – FEBRUARY 28, 2013 For more information click on the fliers below are go to http://rarediseaseday.us/                  Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National…

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…

Joanna Burgess–Joy’s Way–A Journey of Survival, Hope and Inspiration – Reposted June 9 2012


Editor’s Note: In honor of Joanna Burgess being honored tonight (June 9, 2012) in Charlotte, North Carolina as this year’s  Great Comebacks® National Award recipient, we at Courage to Shine would like to re-post her original story “Joy’s Way – A Journey of Survival, Hope and Inspiration” Originally Published on March 24, 2012:  Courage to Shine™ is honored to present the original story of…