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.
Category: Inspirational Stories
Courage to Shine Inspiring Stories
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…
Mrs. Patsy Pope – Bladder Exstrophy – A Miracle Happened
Mrs. Patsy Pope l Bladder Exstrophy l A Miracle Happened l Urostomy l Courage to Shine l Oct 28 2022 – http://www.courage-to-shine.org
92 Year old Patsy Pope of Tennessee born with Bladder Exstrophy and all her medical challenges she has had in live with including a ureterosigmoidostomy then a ileal conduit – urostomy, and her life, marriage and children, Great Story and truly a Courage to Shine story,
Christy Humberd, Wrote:
I was blessed to visit with Mrs. Patsy today. She was born in 1930 with “bladder exstrophy” and has an amazing testimony! Doctors told her parents that her life would be short. But God had other plans! Take some time this weekend to listen to “A Miracle Happened” Click this link:👇 https://youtu.be/wp8J-ubR-gc
I am blessed to know Mrs. Patsy. She came up to me at church and gave me a written copy of her testimony. As soon as I was home, I read it and the tears flowed. This amazing Christian woman has been through a life with many difficulties. She has leaned on the Lord and at 92 years old she stills gives praise to Jesus!💖
Thank you Christy Humberd for the video:
Christy Humberd Facebook Page: https://www.facebook.com/christy.crowe
Mrs. Patsy Pope original video: https://youtu.be/wp8J-ubR-gc
If you would like to write Patsy do so by writing Patsy@courage-to-shine.org
Courage To Shine ™, Turning Adversity to Triumph,
Courage to Shine™ was founded to acknowledge, motivational and inspirational individuals and/or groups of patients whom have overcome congenital genitourinary birth defects and/or major urological surgeries in their childhood (but not limited too), and have the courage, strength and determination, to transform that adversity to triumph later in life.
Courage To Shine ™ website: http://www.courage-to-shine.org
Facebook: https://www.facebook.com/couragetoshine/
Twitter: https://twitter.com/Couragetoshine1
Paula Erwin-Toth
Paula Erwin-Toth is from near Cleveland, Ohio, who not only was born with bladder exstrophy, but became a nurse and was the Director of Cleveland Clinic Wound, Ostomy and Continence Nursing School Email Paula at Paula@courage-to-shine.org
Dilara Arslan – A Scientist from Istanbul, Turkey
Dilara Arslan – A Scientist from Istanbul, Turkey By Dilara Arslan Hi Everybody, I am Dilara from Turkey. I was born as likes some of you with a bladder exstrophy in 1991, İstanbul, Turkey. To treatment of my bladder exstrophy was needed a series of operation since my born. I don’t remember my early ages….
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…
BRITEN DOUGLAS – 2019 COURAGE TO SHINE™ Lisha Martinez & Adam Young Award Recipient
BRITEN DOUGLAS – 2019 COURAGE TO SHINE™ Lisha Martinez & Adam Young Award Recipient My name is Briten Douglas and I was born on October 27th in 1986 with bladder exstrophy. That makes me 32 years old! I say that very proudly because that also makes me a survivor for 32 years of a birth defect that has…
Wen Holmes – If you don’t leap, you will never know what it is like to FLY!
If you don’t leap, you will never know what it is like to FLY! By Wen Holmes I was abandoned in Chongqing, China at the West South Hospital Outpatient entrance in July of 2002; I was approximately 2.5 years old. Born with bladder exstrophy; my bladder was still on the outside, the tissues surrounding the…
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…
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…
Rachel Jury – Rocking2Stomas.co.uk
Rachel Jury of Rocking2Stomas.co.uk and her blog. By Rachel Jury My name is Rachel, and I am a 31-year-old woman from the UK who has been ill now for 10 years. I am a proud double ostomate with a permanent urostomy and ileostomy! It has been a journey, to say the least not just physically but…
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…
2017 Courage to Shine™ – Spencer Daniel Kimbro – June 10 2017
2017 Courage to Shine™ Lisha Martinez & Adam Young Award – Spencer Daniel Kimbro – June 10 2017 Spencer Daniel Kimbro was presented with the 2017 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday June 10, 2017. Spencer is a 16-year-old born with classic bladder exstrophy, cloacal exstrophy, spina birida, and many…
Tommy Ludlow – Climb up to Mt. Everest Base Camp!!
Tommy Ludlow – Climb up to Mt. Everest Base Camp!! 12-year-old Folsom boy climbs Mount Everest despite medical condition Tommy was born with exstrophy, a rare condition that occurs in about 1 of every 50,000 living births, according to the Urology Care Foundation. Author: Frances Wang Published: 3:13 PM PST January 2, 2018 As the Ludlow…
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…
Micheal Dickman – From Australia
Michael Dickman – From Australia
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…
WEGO Health Award – Thomas Exler, Jamie Holmes & Amy Oestreicher
I am excited to announce I have been nominated for the 2016 WEGO Health Activist Awards. WEGO Health, a network of +100k patient influencers, has create the awards program to: Recognize patient influencers who have become leaders among leaders Connect patient leaders to each other, across conditions and platforms Give a big “Thank You” to all…