Award Recipients

Courage to Shine Award Recipients

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

Emily Kohlman

My husband and I met at four years old at Johns Hopkins Hospital in Baltimore, Maryland, scheduled to have the same surgery within days of one another. Cameron called Ohio home. Wisconsin was mine. Both of us were bound to a hospital bed, introduced by the man who gave us back our health and gave us one another, world-renowned surgeon, Dr. Robert Jeffs. We share a birth defect called bladder exstrophy. Back in 1995, our parents could not have guessed this defect would abundantly reward us with a lifetime of blessings.

In 2006, after many years of friendship, we fell in love. I might argue I fell in love with Cameron in 1995, the first time he kissed me at the Ronald McDonald House. Our love was endless, relentless even. People thought we were foolish through high school in a long-distance relationship, counting down the moments until we could start our lives together. We proved each of them wrong. On November 21st 2012, Cameron got down on one knee, pulled an engagement ring from his cowboy boot and asked me to be his wife. In 2015, we had the wedding of our dreams, bought a home and continued to fill our lives with everlasting love and laughter. The days were getting better and better. I thought these would always be the best days of my life until October 1st, 2016.

Despite thinking we were ready to start trying for a baby two months prior, nothing could have possibly prepared me for what was about to happen. I realized I was a couple weeks late and took a pregnancy test while Cameron was at work. Part of me wondered what I was thinking, taking the test alone. You know how the couple usually takes the pregnancy test together, impatiently waiting and staring at the stick changing colors like a chameleon on the bathroom sink? DO that. Not alone. As I suspected, a positive sign appeared after what felt like hours of waiting. I was undoubtedly excited, but it was also terrifying. So many questions pulsed through my mind as I impatiently waited for Cameron to return from work. Would our baby have bladder exstrophy? Cameron’s sense of humor? My terrible vision? I pondered every scenario until the workday was over.

When I told Cam, he shared in my excitement tenfold. As any new parents, the questions came. Especially that lingering question we couldn’t ignore: Would our baby have bladder exstrophy? There is not a known case of both parents with bladder exstrophy having a baby together and little research to prove genetic connections. Scary, right? Absolutely. We found the best doctors and started to plan for the healthiest pregnancy with a special emphasis on finding that baby’s bladder. First, our doctor thought we could visualize the bladder at 14 weeks. (Visualizing the bladder via ultrasound would ensure it was in it’s proper place-meaning no bladder exstrophy.) No luck. Then came week 17… 19… and finally 21. It was getting discouraging quickly. We emotionally prepared ourselves that our baby would have BE, and that was okay.

I will never forget January 10th, 2017. The day before I turned 26 and newly 21 weeks pregnant. The ultrasound technician slid the transducer over my growing belly when our doctor told him calmly, “Stop. Right there. There it is.”  Comfort flooded every ounce of me. The bladder. We found it… ON THE INSIDE! This was a big deal, not only for us, but for many families with lingering questions for their BE kids, too.

The next 16 weeks passed quickly with nearly zero complications. The few I encountered weren’t even BE related… unless you count having to pee about every 15 minutes. (No, really… Every 15 minutes.) On May 23rd, at 37 weeks pregnant, we had our routine check-up, prepared to deliver via scheduled Cesarean section the next week. I waddled into the office swollen and uncomfortable. Fitting in with a family of beluga whales was not far from my reality. To shorten the long story, my doctor made the call to deliver that day. We drove to Cleveland Clinic, and eight hours later with the help of my obstetrician and urologist, our princess made her debut via C-section. Everleigh Grace weighed in at 6 pounds and 4 ounces of absolute perfection.

The last five months have been nothing short of amazing. As I sit here and reflect on my life thus far, I’ve said it before, and I will say it always… Bladder exstrophy has rewarded me in more ways than I can explain. There have been times I called myself crazy for saying this. Times where I thought I couldn’t handle one more bladder spasm. Times when I looked at my scars in the mirror believing no one could ever love me. “This too shall pass.” My mom always reminded me. It seemed impossible to convince the shaken 15-year-old me it was just a phase. That girl didn’t think she had a place in the world.

Eventually, I found who I was and wanted to be with Cameron helping me up each time I doubted the reflection staring back at me. I could never repay him for pushing me to believe in myself, helping me to confidently walk through life and reminding me to never give a damn what people think. With my growing confidence, I found an abundance of strength in sharing my struggle. Teaching other people to fearlessly be whomever they chose to be pushed me to better myself each day.

No one is perfect, nor should they be. There are still nights when I’m singing my baby girl to sleep and think back to those days wondering how I deserve this. There was no dream of mine that led me here. Fate awarded me with great things. Working fiercely towards my goals rewarded me even greater. The negative will try to consume you, if you let it. For those moments, I remember one of the greatest gifts my mom ever shared with me: Garth Brooks. One lyric always radiating in my mind, “…Life is better left to chance. I could have missed the pain, but I’d of had to miss the dance.”

So, dance. Bust out every move you must to get through this crazy roller coaster of life. It’s pretty incredible.

E-mail:  Emily@courage-to-shine.org

© 2016 Emily Kohlman & Courage to Shine™

 

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , | Leave a comment

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 otheracross conditions and platforms
  • Give a big “Thank You” to all the leaders impacting their lives

I am so excited and so grateful to be nominated. Thank you to all those who have nominated me-it means the world!

We have just entered the endorsement phase and I would love if you could endorse me. You can vote daily, so if I have ever supported you, made you laugh or inspired you to keep fighting- please vote for me!

If you know anyone within our community who should have been nominated, don’t worry there is still time. Make sure to nominate all health leaders today because they all deserve to be celebrated!

wego-health-tom-exler

https://awards.wegohealth.com/nominees/12427

wego-health-jamie-holmes

https://awards.wegohealth.com/nominees/12387

wego-heath-amy-oestreicher

https://awards.wegohealth.com/nominees/12393

 

 

 

 

 

 

 

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , | Leave a comment

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 Freeman

Brittney Freeman

Brittney Nichole Freeman is a 27-year-old born with classic exstrophy. Born Brittney Nichole Godfrey on August 2nd,1988,  Brittney had her primary major reconstruction surgery at the Children’s Hospital of the University of Oklahoma in 2000, as a patient Dr. Bradley Kropp. He is, in her eyes, a miracle worker. She loves to proudly show off his handiwork in the form of her awesome belly button; that is also her cathing stoma.  She loves that she is able to catheterize, even if it can at times be very painful.  As a child she was constantly wet and wore pull ups until she met Dr. Kropp and his nurse Lori in 1999.

13600170_10210040552269734_5443692649192234856_nBrittney had a wonderful childhood being raised in her hometown of Sand Springs, Oklahoma. As a child Brittney loved to dance, cheerleader, and write contracts for her parents to sign. In elementary school she attended a theater camp and it was there that she fell in love with being on the stage. Even though bladder exstrophy made it hard to fit in with her classmates at times, she still was able to make a great group of friends that she remains friends with today. In the summer of 2003 Brittney got eye glasses; and this changed the course of her life forever. For the first time she was able to read without getting a headache! During that summer Brittney fondly remembers how reading The Notebook, by Nicholas Sparks, kindled an intense love for reading. This love of reading inspired her to pursue a profession as an English teacher. And her love of Theater never left her.  Brittney is also a certified Speech, Debate, and Drama teacher.

13626953_10206117424726074_7775300593293277342_nBrittney considers her greatest accomplishment so far is earning her bachelor’s degree in English education from Northeastern State University. She credits her family and their unyielding support for her as the main reason she was able to graduate university. Her mother, Julie; and her Father, Troy; supported her through college, high school, and childhood. On April 19, 2008 Brittney married Donnie Freeman. Her husband and step-son, Tray love her unconditionally. Brittney feels fortunate to have a close and supportive family; her brother, Anthony and his wife, Dreama, her adopted sister, Cristy and her loving grandparents, Anna and Lorenza Godfrey. She is a self-described “momma’s girl” and can be found every weekend visiting her mom, dad, and grandparents at their home in Sand Springs.


Brittney loves to teach; it is truly
Mher calling. She teaches 8th grade English at Catoosa Public Schools in Oklahoma. She also sponsors the Drama club, and Student Council.

Brittney was at times in her life was bullied for being different. So, she tells her students about her birth defect and she also has them read articles written for the “Courage to Shine” blog page. She loves to use her bladder exstrophy and the adversity that she has faced within her lifetime to inspire her students to know, “that no matter what you are facing, you too, have the courage to shine.”

Read more about:  Brittney Freeman – Teaching Others To Shine!! Click Here

To email Brittney Freeman: Brittney@courage-to-shine.org

Brittney Freeman

Brittney Freeman

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

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

Courage to Shine Tour III Team - Misty Blue Foster & Thomas Exler

Courage to Shine Tour III Team – Misty Blue Foster & Thomas Exler

In early 2012, Thomas Exler and Mist Blue Foster were invited to attend and to speak at the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Alvia, Spain from Friday, November 23 – Sunday November 25 2012.

Courage to Shine™ Team gave motivational presentations based on their own experiences living with bladder and cloacal exstrophy, and participated in workshops during the conference, as well as interact on a personal level with many of the families who attended the ASEXVE Medical Conference.

ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Alvia, Spain – Programa Encuentro Medico Asexve 2012

Entire Program: Programa Encuentro Médico Asexve 2012Encuentro Medico ASEXVE 2012

In addition to the conference, members of the Association, escorted Thomas Exler & Misty Blue Foster to many of the tourist attractions in Madrid, Avila, Campo de Criptana and a member family even hosted them for a night in Campo de Criptana.

Thomas Exler & Misty Blue Foster both stated they could not have been treated any nicer and truly feel they now have a family in Spain.

Please view the video below to see some of the pictures and videos from the 2012 Courage to Shine Tour III – Spain.

Newspaper articles in Spain:

Unas jornadas reunirán en Ávila a los principales cirujanos pediátricos  (A conference meeting in Avila major pediatric surgeons) – Diario de Avila.es – November 20, 2012

Afectados de extrofia vesical reclaman unidades de referencia   (Affected units bladder exstrophy claim reference) Diario de Avila.es – November 24, 2012

Los enfermos de extrofia vesical demandan hospitales de referencia  (The bladder exstrophy patients require referral hospitals) – Avilared.com – November 25, 2012

—-

If you are interested in joining us and being apart of a future Courage to Shine™ Team please e-mail us at contact@courage-to-shine.org

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , | Leave a comment

ENRIQUE ESCAJADA – Courage To Shine™ – Role Model of the Month for March 2012


Enrique Escajeda of California has been named the March 2012 – Courage to Shine – Role Model of the Month.

In his honor we have reprinted his story below from January 26, 2012

———————————————————————–

Enrique Escajada – Aerialist Overcomes Adversity to Fly

Published on January 26, 2012

Aerialist Overcomes Adversity to Fly

by Enrique Escajeda

Hello, My name Is Enrique Escajeda and I was born with Bladder Exstrophy. For those that don’t know bladder exstrophy is when a person is born with their bladder on the outside of the body.  It’s a complicated ailment that demands many surgeries especially throughout childhood. The reason for my post hear would be that despite all that I happen to be a very physically active individual holding over 5 jobs in physical performance. Some wonder, how does one such as myself, enter a world such as this with a bed ridden history that’s so extensive?  I suppose the only answer I have for that is my view on choices and control. i owe much of my perspective to my mother due to the fact that if it wasn’t for her I’m sure I wouldn’t be doing the things I am today or even thinking the way I do.  So here is my story in how my mom raised me followed with the dark adolescent period and then how her old tactics brought me to where I am today.

When I was a child she noticed that whenever I was in the hospital (which was a lot) doctors and nurses would never ask me if they could take my blood or remove my stitches or bandages. They would all tell me what they were going to do and when they would do it.  Nothing was ever my choice and I didn’t have any control with what they did to my body. It was then that she began to give me small choices. Whenever she saw an opportunity my mother would ask me to make little decisions with 2 choices.  Most often it was about where I wanted to eat. Did I want McDonald’s or Carl’s Jr.?  It was small but gave me a sense of what was within my control. Later this became a fun little game for me. Whenever my mom would ask me to do something I would respond with “do I have a choice?” If it was about cleaning my room though the answer was usually NO.

Read more about Enrique Escajeda, please go to the original posting of the story at https://couragetoshineblog.wordpress.com/2012/01/26/enrique-escajada-aerialist-overcomes-adversity-to-fly/

© Copyright 2012 Courage to Shine™

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

TOM FLOOD – The 2010 –Tom Sylva – Courage to Shine™ – Australia Recipient


Tom Flood after receiving the Courage To Shine – Australia Award

On June 12, 2010 at the Coogee Bay Hotel in Coogee Bay, Sydney, NSW, Australia held in connection with the 2010 BEECHAC (Bladder Exstrophy, Epispadias, Cloacal exstrophy, Hypospadias, Australian Community) International Conference “Towards the Future”, Tom Flood was given the 2010 Tom Sylva – Courage to Shine – Australia Award for his long term dedication of helping other fellow patients.

Tom Flood is currently the president of the Ostomy NSW Ltd and is living in the state of New South Wales, Australia.

Tom Flood with Thomas Exler, Founder of Courage to Shine

The following two film clips:

First, Tom Flood being awarded the 2010 – Tom Sylva – Courage to Shine – Australia Award at Coogee Bay Hotel in Coogee Bay, Sydney, NSW, Australia on Saturday June 12, 2010

Second, is a portion of Tom Flood’s presentation at the 2010 BEECHAC Conference on Sunday, June 13, 2010

Tom Flood was awarded the ‘Order of Australia Medal’ (OAM) in the Queen’s Birthday Honors for service to community health through leadership and advocacy for people living with stomas. You can view by click here

Tom Flood Order of Australia MedalClick here to view this as a .pdf file http://www.ostomynsw.org.au/docs/newsletters/ONLSpringNewsletter2014.pdf

For more information on Courage to Shine Awards or Courage to Shine, please go www.courage-to-shine.org to e-mail contact@courage-to-shine.org

© Copyright 2012 Courage to Shine™

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , | Leave a comment

Blog at WordPress.com.

%d bloggers like this: