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.
Tag: inspirational
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…
Anja Christoffersen – Behind The Smile
Note: Anja Christoffersen released her book Behind The Smile in October of 2018. You can view her website at Anja Christoffersen. By Anja Christoffersen At 28 weeks of pregnancy, my parents found out I had a life-threatening condition that malformed most bodily systems. Devastated, my parents began a search for answers. There was no cause identified and…
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…
Janet Rankin – Triumph Over Adversity Down Under
Janet Rankin – Triumph Over Adversity Down Under
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 2 of 2 – The Interview
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 Kiersten Kelly. This is…
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…
Leonard H. Newton Jr. – “You may knock me down, but I will never fall”
Editor’s Note: Courage to Shine™ Team Members first came across Leonard at a conference in 2009, and we were so impressed with Leonard that we are so honored to have the chance to present Leonard Newton’s story here on Courage to Shine™ . “You may knock me down, but I will never fall” By Leonard…
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…
News Release: Courage to Shine™ Team to Attend ASEXVE Medical Conference in Avila, Spain from November 23 –25, 2012
Courage to Shine™ Team to Attend ASEXVE Medical Conference in Avila, Spain from November 23 –25, 2012 Pittsburgh, PA, USA, November 5, 2012: Courage to Shine™ Team lead by Thomas Exler, president of the Association for the Bladder Exstrophy Community (ABC) and founder & chairman of Courage to Shine™ along with team member Misty Blue Foster, LVN,…
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 – Courage To Shine™ – Role Model of the Month for June 2012
MISTY BLUE FOSTER – Courage To Shine™ – Role Model of the Month for June 2012 Courage to Shine Editor: Misty Blue Foster has been named the June 2012, Courage To Shine Role Model for the month. After you take the time to read her inspirational story below, you will totally understand why Courage to…
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…
Jamie Holmes – Jamie’s Dream Team Presents – ‘Beyond Belief’ – Posting by UroMed on the event at UroMed Hometown Heroes Blog Site
Jamie Holmes – Courage to Shine Role Model of the Month for January 2012. On Sunday May 20, 2012 Jamie and her entire Jamie’s Dream Team held an event called Jamie’s Dream Team Presents – ‘Beyond Belief’ at the Hollywood Theater in Dormont, PA. The evening was an amazing success!!! Below is a release from…
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…
Natalia from Moscow – Mother’s Love for Daughter Has Helped Many Families All Over Russia
Courage to Shine Editor: Today we have a story from a young mother, Natalia Mayorova, from Moscow, Russia. Who’s love for her daughter, has turned that love into a project that has helped many families all over Russia and around the world. Sometimes in life it is just the little extra things that can make…