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Kylee Hunter- You Can Call Me “Smiley Kylee”


You Can Call Me “Smiley Kylee” 

Kylee Hunter

Kylee Hunter

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 occurs in 1 out of 50,000 live births, where the bladder and associated structures are improperly formed.  Throughout my childhood I’ve had fourteen surgeries to make my life as “normal” as possible.  To manage my condition, it requires different techniques just to empty my bladder and prevent serious infections.  For example, I’ve had to visit the nurse’s office every two hours to catheterize myself, as far back as kindergarten.  Catheterization is vital for me to survive. If I don’t catheterize in time, my bladder will cause pressure on my abdomen and block my catheter from entering through my Mitrofanoff.  A Mitrofanoff is a continent urinary diversion where my appendix was created into a channel from my abdomen wall into my bladder.  Despite catheterizing every two hours to prevent reflux into my kidneys, I’m still incontinent.  Since birth, I’ve worn diapers, pull-ups, or Poise pads. I still get infections, but as I’ve gotten older and more responsible they are minimal. Routine visits to my urologist and ultrasounds keep me in check.

Dr Mitchell & Kylee Huter

Dr Mitchell & Kylee Huter

One of my most challenging experiences has been going through school with an invisible disability. No one knew anything was wrong with me unless I shared my story.   Having this challenge also caused me to miss several days of school because of doctors’ appointments, urinary tract or kidney infections, and surgeries.   Not socializing with others or going days being confined to my house made me extremely sad and lonely.  Living with bladder exstrophy as a child is an experience one would never wish to endure alone. The closest person with this disability has always lived several miles away.

My mother also struggles with both Crohn’s disease and fibromyalgia and my youngest brother has severe asthma.  This makes my life difficult because if all three of us are having problems at the same time it’s very demanding on my dad to take care of us. Therefore, our family has had to learn to be patient with one another and this hasn’t always been easy.  I have become skilled at listening and holding my tongue when I get frustrated.  We still love each other despite our difficulties. It is a work in progress. From having bladder exstrophy, I learned to recognize the need to be kind to everyone, because you never know what might going on behind the scenes in their lives.

Rebecca Hunter, Kylee's Mother with Kylee Hunter

Rebecca Hunter, Kylee’s Mother with Kylee Hunter

The decision to not allow my bladder exstrophy to define me and decide what I will accomplish in life wasn’t easy.  At first, I attempted to keep my medical issues secret, to feel “normal” and to not place myself in a situation where I might be teased.  I’ve since realized I need to not hide these anomalies which make me who I am, but to embrace them and show everyone these differences and challenges make me the strong person I am today.

I have been blessed with a wonderful family.  Recognizing the need to help me and support others with bladder exstrophy, my parents organized a support group campout.  For seventeen years now it has been held annually at Lake Tahoe for families with a bladder exstrophy member.  The B.E.S.T. (Bladder Exstrophy Support Team) in California offers exstrophy families emotional, educational, and social support.  Because of the stigma of physical differences and incontinence, they often experience emotional problems besides their physical difficulties.  Due to the rarity of bladder exstrophy, children with this anomaly often feel alone and different from everyone else.

Kylee Hunter and Thomas Exker at the B.E.S.T. Campout

Kylee Hunter and Thomas Exker at the B.E.S.T. Campout

As a young child, I began with just friend-shipping other children at the campout.  As I’ve grown, I’ve taken a greater role in the campout’s success. The preparation for the complete weekend of camping, speakers, and group activities is extensive and takes all year.  I start by brainstorming ideas with my mom and grandma and then get to work planning and preparing my assignments.  My duties include putting together the songbooks, campfire programs, games, crafts, and name tags.  We offer recreational activities and educational sessions addressing exstrophy topics.  I help come up with suggestions for topics and our keynote speakers, who are pediatric urologists from around the country.  For the past three years, I’ve led a group discussion for the girls; they get to relate, talk, ask questions and be around others who have been through the exstrophy experience.  I also share my personal experiences with the parents of these children, encouraging them to not worry so much and explaining their kids will be okay. I try to be outgoing and friendly to make sure all the children feel welcomed and accepted.  The increased numbers of families attending each year is evidence our efforts are successful and having an impact. I love to see the networking that goes on and the support each family offers one another. I plan to always be an advocate for the bladder exstrophy community, forever-educating families, obstetricians, and physicians, on the resources available to those born with this abnormality.  When my parents can no longer run our camp, I plan to continue what they started.

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Kylee Hunter with her softball trophies

Since the start of elementary school, I have played basketball and softball.  During my sophomore year of high school, I was a three-sport athlete. Despite my disability I made it on to the Varsity Tennis, J.V. Basketball, and J.V. Softball teams.  However, in the middle of basketball season, my back began causing me severe pain, I ended up visiting a spinal surgeon. From him, I learned I had a splayed pelvis, with a bone missing that was supposed to hold it intact, all caused from my bladder exstrophy.  The surgeon said I had minimal back support and that hip pain would prevent me from running on hard surfaces. He also said there was no way to correct it and recommended I switch to biking or swimming.  I was devastated and didn’t want to give up the sports I loved.  I decided I would not give up all this hard work.  So, I asked the doctor if there was any way I could still play these sports.  He said I could try physical therapy to strengthen my abdominal muscles and back muscles but it would be very difficult.  I took on the challenge, and it was incredibly hard!  I went to the physical therapist often and would shake because the exercises they had me do were so painful.  But, because of my determined efforts, I was able to stay in tennis and two years later, my senior year, had the honor of being chosen captain of the team, placed 5th on the ladder in singles, varsity lettered in Tennis, and helped my team place 2nd in the league.  This experience was a great lesson and taught me I can persist no matter the enormity of the challenges.

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Kylee Hunter, Playing Singles in The California State High School Tennis Tournament

I also might not be on the official cheer squad, but I love cheering on my team while I play sports. Cheering on my friends, family, and everyone I associate with, is something I do well.  I want to make sure everyone gets involved, and no one feels left out.  During my softball recreation years, I received the sportsmanship award five times, from five different teams.  This meant a lot and so I’ve continued to be this person on all my sports teams, cheering others on, being respectful and teachable, and encouraging teamwork.

From a young age I’ve loved to serve others.  I’ve now been a part of the Girl Scouts of America for 9 years. For my Bronze Award Project, my troop signed several Christmas cards for the elderly and delivered them to numerous nursing homes in the surrounding counties.  I loved being able to wish a Merry Christmas to people who rarely receive visitors during the Christmas season.  They were so excited to see our troop!  We also drew them pictures and wrote nice little letters. We stayed and played chess with them and learned about their lives while they shared stories.  For my Silver Award Project, I sewed and stuffed “Hearts 2 Hug” for the local Sheriff’s Department and Women’s Shelter to give to traumatized children.  I hoped to provide the children something to hold on to while scared, frightened and lonely.  It surprised me how excited the children were for a simple heart pillow. This experience instilled in me a desire to serve children more often. Every child needs to feel loved, even if it’s through a simple stuffed heart.  I’m currently working on my Gold Project, which will be putting together a pamphlet with information about our B.E.S.T. campout and other resources for the Exstrophy community.  I plan to distribute this statewide.

Kylee on the flute

Kylee on the flute

Music is another primary factor in my life.  I began playing the flute in the fourth grade and was section leader throughout middle school. My freshman year I was picked as 1st chair flute in the Advanced Symphonic Band.  I learned how to lead sectionals, calm my section down, and teach others fingerings. From this experience I made lifelong friends and my love for the flute grew.  I loved how I could help my friends become better at the flute and I’m now giving flute lessons to my little brother.  My freshman year our concert band received the highest rankings at every competition.  It was also an honor to have been invited to join the Advanced Women’s Chorus my first year of choir.  This choir also received the highest competition rankings.  I have since lettered in music and been blessed to continue my love of music, singing and playing my flute with my choir at church.

Kylee Hunter Homecoming Queen

Kylee Hunter Homecoming Queen

This year, as a senior, I was selected to sing in the Chamber Choir.  It is a great honor to be a member of this award-winning choir.  We perform at several community functions throughout the year and provide holiday and seasonal school performances.  One must audition and commit to after school practices. Along with singing, I was chosen to play my flute in the cabaret to raise money for the choir trip to the Heritage Music Festival, where both the Chamber Choir and Advanced Women’s Chorus won first place.

My involvement in Student Government has extended throughout elementary school, middle school, and high school. In middle school, I was the ASB Treasurer and then in high school I’ve served as the Freshman Class Representative, Sophomore Class President, Community Service Coordinator, and Associated Student Body Treasurer again. I’ve been responsible for planning multiple dances, rallies, activities and homecoming events. I also help plan the Special Education class prom and dinner and their class parties each year. As ASB Treasurer, I manage the finances for the student activities.

Kylee Hunter Homecoming Dance

Kylee Hunter Homecoming Dance

I am also the Public Relations Officer for both Key Club and the Family Roots Club, and as the Community Service Coordinator I put on the Pennies for Patients fundraiser, the Kids Canned Food Drive, served on the Random Acts of Kindness Week committee and helped plan a fundraiser for a girl who needed a heart transplant.  I’ve provided staff luncheons and gifts for every teacher on their birthday.  I have also performed many service projects. Last year I helped start the Family Roots Club. Our club taught people how to use ancestry.com and showed them how to find their ancestors. I was the Public Relations Officer, so I helped recruit and make posters for the club.

Through my school leadership involvement I’ve learned to work with a diverse group of people. Our goal has always been to unify our school and provide a positive learning environment. I certainly appreciate being surrounded by people who demonstrate leadership, strength, guidance, and responsibility. I am so grateful for all the opportunities I have been given and hope to be able to keep my health up so I can stay involved and help other kids know that even if they have a disability they can do hard things.

Kylee Hunter and her sister Tristan Hunter

Kylee Hunter and her sister Tristan Hunter

The summer of my sophomore year I won the title of Jr. Miss El Dorado County! It was fun and extremely rewarding and I served my community in several ways.  I also had the opportunity to judge a pageant based on confidence and inner beauty.  I’ve been privileged to fundraise for the Children’s Miracle Network and raise awareness for my platform, the Ronald McDonald House.

I competed the following two years in the Miss Sacramento County’s Outstanding Teen Pageant.  Both years I placed in the top four and was chosen as Miss Congeniality and the Facebook Fan Favorite.  One year I also won the Spirit of America award. Recently, I placed third runner-up in the Miss Placer County pageant and received the overall Community Service and Best Essay awards.  While serving on the Miss Placer County court, I took part in multiple community service events and parades.  My favorite has been raising money for our military at the Honor Bowl event, sponsored by The Honor Group. They educate communities about the needs of our Veterans.  It was a privilege to view a fallen soldier ceremony.

One summer I had the privilege of being an assistant counselor to a group of ten girls at my church summer camp.  During the week I assisted the counselor by helping the girls build relationships, go on a hike and teach them how to build a fire and other useful skills.  This past summer, I was on the volunteer staff again.  Every day I woke up and helped on the rock! At the rock, we belayed for repelling, rock wall climbing, and trust exercises.  I loved being able to belay on the rock wall because I could see the progress in the girls’ skills and help them find footholds.

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Kylee Hunter Winning Pageant

Last year I was selected to be a self-esteem coach for presentations on positive self-awareness.  This was part of the Soroptimist program, “Girl Talk”.  As one of the five public speakers, I helped write the script from personal experiences and also learned how to talk to middle school aged girls about growing up and gaining self-confidence.  I was able to look back on my life and how I have dealt with my disability growing up.

Holding a job during school, sports and church activities is both challenging and fulfilling. I worked summers at the Frostbite Shaved Ice Shack and by age 16 had become a shift manager. In the fall of 11th grade, I started working for Regal Movie Theater, which taught me how to prioritize my time and communicate with customers.  It is satisfying to realize how well I have learned to work with others and save money for my mission and college.  I have worked at the movie theater for 1 year now and was employee of the month last October!

This summer I’m planning to be a counselor at the Youth Rally.  This is a camp for kids with an array of conditions affecting their bowel and/or bladder systems.  It is difficult being a teen with a disability, and I want to support them through these tough times just as my counselors helped me.  Another desire of mine is to become a motivational speaker for youth.  I not only know what it’s like to experience the trials of living with a disability but also what it’s like to be a teenager.  Life is difficult, but I’ve learned if you stay positive and make good choices, things will invariably get better.  It’s important to me to help people with disabilities grasp that all people deal with challenges and those issues are there for a purpose.  Through my personal adventures, I have learned it’s essential to discover what you love to do and then do it, so you can enjoy life and be happy.   I am determined to never give up or miss out on whatever I want to do in life.

Kylee Hunter at Macchu Picchu, Peru

Kylee Hunter at Macchu Picchu, Peru

Last year, I decided I wanted to make a larger impact in the world, so I signed up for the Humanitarian Experience For Youth program.  In addition to hiking the amazing natural wonder of the world, Machu Picchu, it was here I realized how blessed I have been and the depth of the passion I have for serving those less fortunate.  During this 17-day service trip to Lima, Peru, I helped build a medical clinic in an area that lacked treatment for families.  We built the walls with bricks and cement and I learned how to install rebar.  I also helped local schoolteachers with their English program by volunteering in their classrooms twice a week.  It was very rewarding to accomplish so much in so little time. The work was extremely exhausting, but I would do it again without hesitation.  Even though my parents were very concerned about my health while in Peru, I took all precautions, drank only bottled water, catheterized frequently, watched what I ate, used a ton of hand sanitizer and came back as healthy as I was when I left. Because I’ve been the recipient of so much service, I want to always “pay it forward”

Kylee Hunter as Miss Outstanding Teen

Kylee Hunter as Miss Outstanding Teen

I’ve also always wanted to serve a mission for my church.  Doing so means spending eighteen months spreading the word of Christ and offering service wherever you are sent. This past summer, while I traveled to Peru, I performed service there with the local church missionaries.  Those seventeen days were the happiest I have ever experienced.  I believe it’s because I totally focused on others. My humanitarian leader told me he served a church mission and that our experience in Peru was as close as one could get to the feeling you have on a mission without serving one. Assisting in Peru has strengthened the desire I have had since I was a child, to prepare for and to serve a church mission. I am hopeful my medical challenges will not derail this dream.

I also love to visit people in the hospital.  When I learn a child or adult in the hospital for any reason, I make it a priority to visit them often.  I have a natural soft spot for those in the hospital because I know hospital stays are not fun.  I have visited with family, friends, friends of my parents and even acquaintances.  Visiting others has further educated me on patients’ perspectives, which is helping me in my goal of becoming a Child Life Specialist.

Another experience I recall is when the nurse struggled to get the I.V. to work for my twelfth surgery. She had tried numerous times without success and I was on the verge of tears.  As I was about to cry, a kind woman came in, held my hand, taught me techniques to help calm down and helped me receive a numbing shot.  The nurse was then able to get the I.V. in on her next try! I was in awe of this angelic person whom I learned was a Child Life Specialist.  Right at that moment, I decided I wanted to be just like her, comforting youth going into surgery and reducing any fear and confusion they might experience concerning their medical procedures.  I believe my experience, as a child in the hospital, will benefit the children I work with through my ability to empathize.

Kylee Playing Games at the BEST Campout

Kylee Playing Games at the BEST Campout

This fall I plan to attend Brigham Young University and take advantage of their excellent Family Life and Human Development department. Child Life Specialists are child development experts who work with medical staff to make sure life remains as normal as possible for children in health care settings, and to help meet the unique needs of each child and family. Through my experience as a patient, I believe I can be forward-looking, equipped with knowledge of what helped me. I have faith in my good intentions and goals in life and never plan to give up and always expect to succeed.

A favorite quote of mine is, “Just know, when you truly want success, you’ll never give up on it. No matter how bad the situation may get.” ~Unknown.

© 2016 Kylee Hunter & Courage to Shine

E-mail at Kylee at Kylee@courage-to-shine.org

For additional info on Kylee go to: Kylee Hunter

Please read Courage-to-Shine.org disclaimer!

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Rachel Fisher – Turning Fear Into Confidence


Turning Fear Into Confidence

Rachel Fisher

Rachel Fisher

By Rachel Fisher,

My name is Rachel Fisher, I’m 23 years old and I was born with classic bladder exstrophy.  My life began in New Bern, North Carolina in 1992.  My medical experience started with an immediate closure, reclosure and bladder neck reconstruction.  Unfortunately, at age four I developed blockages in my ureters.  My doctor in North Carolina wanted to plug my ureters into my bowels because the blockages were damaging my kidneys, making a solution necessary and urgent.  My parents weren’t convinced it was the best solution and starting researching doctors all over the U.S. and it led them to Dr. Gearhart at John’s Hopkins.  I became a patient at Hopkins at age four when I underwent a major surgery that created a neobladder utilizing my intestines and a mitrofanoff utilizing my appendix.  My stoma is located where my belly button should be and I was told to catherize every 4 hours.  I then became the youngest patient of Gearhart’s at the time to cathertize myself in October 1996.  This was my biggest surgery; I was in Baltimore for 6 weeks total and 4 weeks in the hospital recovering.  I remember spending Halloween there, how hard it was to learn how to walk again after lying in bed for

Rachel and her mom at Johns Hopikins Hospital in Baltimore, MD

Rachel and her mom at Johns Hopikins Hospital in Baltimore, MD

weeks and staying at the Children’s House with other kids.  After the major surgery I had two more within 9 months and my dad was frustrated with not being able to help me.  I can’t imagine my parent’s experience.  Honestly, everything I just said about my early years of life affected my parents much more than it did me.  I have only a couple of memories of being in the hospital and never any of being in pain.  Since then I have been healthy and happy, only having two minor surgeries, one in middle school and one in high school.

Outside of the times I spent in the hospital, I lived a completely typical childhood.  When I wanted to do something, I never thought that I couldn’t because of bladder exstrophy.  It might have been a concern for my parents but I was never aware.  I never felt like I was treated differently than my siblings or my friends.  I participated in a variety of activities such as gymnastics, dance and t-ball but committed to soccer and played my whole life on competitive travel teams.

Caelin and Rachel with Dr. Gearhart at Johns Hopkins Exstrophy Picnic

Caelin and Rachel with Dr. Gearhart at Johns Hopkins Exstrophy Picnic

Although I didn’t consider bladder exstrophy a huge issue in my daily life as a child, I still enjoyed bladder exstrophy picnics every summer in Baltimore was something I always looked forward to attending. When I was around 6 years old, I asked my mom “Why didn’t my brothers and sisters have bladder exstrophy too?”.  She responded by trying to explain how rare the condition was.  I immediately came back with “No you’re wrong! Didn’t you see all of those kids at the picnic?”.  From the age of 6 I never felt alone.

I made friends there I still speak to on a regular basis.  I even showed my friend Caelin at a picnic how I cathed when I was 8 and she was 7 years old.  She was currently incontinent and my parents and I shared my success with a catherizable stoma and then Caelin had the surgery that year.  Our parents were close and we all still keep in touch.  I wouldn’t have the friendships I do with other bladder exstrophy patients

Rachel and Her Brother

Rachel and Her Brother

today if my parents didn’t make the effort to connect with other families experiencing the same thing.  At the picnics every year, we break out into small groups and talk about issues we are dealing with.  Most of the talks consisted on the topics of body image issues and romantic relationships.  Opening up about our bladder exstrophy specific struggles was therapeutic for all of us.  It was the only place in the world where everyone around me identified with me and understood why I felt uncomfortable in certain situations.  One of my friends told us when people asked about her scars she just told them they were results from a shark attack.

During my teenage years I was angry with my parents for being grounded a lot, but I also became angry that I had bladder exstrophy, something I didn’t think about as a child.  One of the hardest parts of growing up with bladder exstrophy for me was wearing a bathing suit in front of my friends.  I always hated the moment I had to take my cover up off because my friends would see my scars.  It was the only time where everybody around me knew I was

Rachel with Her Father

Rachel with Her Father

different.  I wanted so badly to feel the same as everyone else.  I didn’t think it was fair that I was born with bladder exstrophy and my friends were born typical.  I wish I knew then that every teenage girl has self-esteem issues when it comes to wearing a bathing suit in front of her peers.  It is a completely normal part of development.  However, I still am not completely confident in a bathing suit but have made a lot of progress since my teenage years.  Last summer was the first time I wore a bikini around all my friends.  I wish I would have been braver and realized that the anxiety about people seeing my scars is so much worse than what actually happens.  Most people notice it for a minute and move on and a few ask questions.  Nobody is rude, and the more I talk to people about it, the more self-confident I have become.

Rachel and Her Mom at college graduation

Rachel and Her Mom at college graduation

Another issue that comes up for me frequently is the problem of forgetting my catheter.  Every time I forget it, or lost it, I become very angry because I have to go home or get a ride to my car where an extra was located.  I think the anger comes from being mad at myself for forgetting it but mostly because it a reality check that I am different.  Nobody else has to worry about if they have medical equipment to pee.  They can literally be anywhere and can pull down their pants to relieve themselves.  I wish I had that freedom.  I wish I didn’t feel so helpless when I left my catheter somewhere and couldn’t use the bathroom until I located one.  Looking back on it, I could have avoided many of those situations by placing extra catheters everywhere.  Storing multiple catheters in my purse, car, and friends’ houses is very necessary and something I’m still learning.

Telling people about bladder exstrophy has been difficult but I am getting better at it.  I have known most of my friends since early childhood or middle school.  I told most of them when I was so young it was before the embarrassment of being different set in.  When I tell

Rachel rock climbing in Peru

Rachel rock climbing in Peru

people now, I usually tell a shortened version and I am not ashamed anymore, if anything I am proud.  I fill them in on how my bladder was exposed when I was born and random surgery stories but I typically leave out how I use a catheter.  The last new friend I told was in amazement, in a good way.  We were at a party and she wanted to go to the bathroom together, like girls do, and I thought to myself “Whatever I’ll just tell her, I have to pee and don’t feel like making something up to avoid using the same bathroom as her”.  She thought it was so cool that I could pee through my “belly button” and was so honored I told her.  She knew that I trusted her because I told her and our friendship became stronger after that night.  I was reminded once again, the anticipation of sharing information or showing my scars to people is so much worse than what actually happens.

I was very lucky to have grown up in a small town with so much support from my parent’s friends and my friends.  I felt safe knowing most people that knew me growing up knew about my condition.  My best friend since we were babies was always concerned about how often I needed to use the bathroom or if I had a catheter or not.  For example, we were involved in a car accident

Rachel spending time with her foster kids

Rachel spending time with her foster kids

when we were 16 and rode in an ambulance together to the hospital.  We had both been knocked unconscious and were delirious during the ride.  The EMT’s were asking us questions like “Are you allergic to any medicines?” and “Do you have any pre-existing medical conditions?”.  I answered “No” to both questions.  My best friend, on the stretcher beside me, says very loudly “yes she does! Rachel, tell them about your bladder!”.  This is a perfect example of why you should let your friends know so they can help you.

My dad passed away my senior year of high school.  I have a very specific memory of him that embodies how much he built my self-confidence.  We took a family trip to beach when I was young, maybe middle school, and I wore a regular bikini, so my scars were all showing.  I remember my dad telling me “That’s my girl” and “I’m so proud of you” with a huge grin on his face.  I will never forget that feeling of making him proud for not being ashamed and wearing whatever I wanted.  I still think of that every time I feel insecure about anybody seeing my scars.  I was raised a brave, confident girl and will continue to be one.

Rachel speaking at the 2015 International Bladder Exstrophy Conference in Seattle, WA

Rachel speaking at the 2015 International Bladder Exstrophy Conference in Seattle, WA

I strongly believe the best two things my parents did for me was constantly increase my self-esteem and connect me with the bladder exstrophy community.  I cannot say enough how confidence building and support from my family, bladder exstrophy friends and friends from home, has helped me cope with every new difficult situation along the way.

I have developed a passion over my lifetime for traveling and helping others.  I have had two jobs working with individuals with special needs.  I lived and volunteered in Peru for two months and participated in sometimes-dangerous experiences, such as the rock-climbing and paragliding.  I have found helping

Her Mother and Dr. Reiner with Rachel at the 2015 International Exstrophy Conference

Her Mother and Dr. Reiner with Rachel at the 2015 International Exstrophy Conference

others and living life to the fullest is something I have in common with the other BE young adults that I’ve met over the years.  I think each person I’ve met with bladder exstrophy is uniquely empathetic because of our experiences and are overall incredible people.  I would love to be able to work with children with medical conditions and continue to contribute to the bladder exstrophy community.  I gave a speech at the Association for the Bladder Exstrophy Community International Exstrophy Conference in Seattle, WA in August 2015.  It was an amazing experience to be able to tell my story and feel as if it gave some of the parents hope about their children.  I received my bachelors of psychology and am currently a foster parent for a non-profit organization, Casa de Esperanza de los Niños, in Houston, Texas.  I have cared for seven children so far and fell in love with all of them.  I have recently been accepted to the masters program for social work at the University of North Carolina and will be start to pursue my degree in August!

© 2016 Rachel Fisher & Courage to Shine

E-mail Rachel at rachel@courage-to-shine.org

Please read Courage-to-Shine.org disclaimer!

ABC Medical Interview in Houston, TX posted April 23, 2016

Categories: Courage to Shine News, Inspirational Stories, Role Models, Uncategorized | Tags: , , , , , , , | 3 Comments

Lowell Evans – The Village


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By Lowell G. Evans

I was born on November 7, 1960, the youngest of nine (9) children. My hometown where I was raised is Gloucester, VA. My parents were the best anyone could ask for as everyone who knew them looked up to them for the way they treated others.  This truly made our family “close.”

In 1980 while playing basketball in college in Norfolk, Va. I had a fall that later caused me to develop epilepsy. This was something that was totally new to me and also something I could not believe or accept. This was diagnosed when I had a seizure in the early morning in my dorm room. With the seizure, I was totally unconscious so when I came to and saw the paramedics standing beside my bed, I quickly asked my roommate, “Are you o.k.?’ He looked at me like I was crazy and I guess the reason why was because the paramedics were standing beside “my bed” not his. I just could not understand why they were there. It could not have been for me! This is what I thought anyway.

One of the paramedics then said to me, “Sir we believe we detected epilepsy.” With me being awoken at 3:00 am in the morning, with paramedics standing by my beside, and them stating that they detected “epilepsy” my response to them was “Sir, I don’t smoke that stuff! You can check my drawers!” I had never heard of the term epilepsy so I thought they were saying I was doing something “illegal.” There was no way I was going to get in trouble for something that I did not do. The paramedics calmed me down and then informed me that the “epilepsy could have come from my genes.” I understood them then, at least I thought. This is when I went to my closet and start pulling through my clothes. The paramedic asked me what I was doing. I told them, “These are the jeans my brother gave me when I came to college and he did not say anything was wrong with them!” The paramedic, who was then frustrated, then asked me to have a seat

After a number of questions about my past few months, recent past, I informed them of a fall I had and this made the paramedics take me to the hospital where I was diagnosed as I was diagnosed to having epilepsy.

This was not a problem for me in the beginning because I was feeling fine after I got back to the college campus. Although I was not allowed toIMG_9514 drive, everything I needed was right there on campus. This is including the things I did not need such as “discrimination.” All because of “one seizure” I was questioned about my ability to complete college, obtain a job, continue to play sports, and even find a mate to date! I could not believe this. It was then that I realized there was a “lack of knowledge” of epilepsy in society. People with the condition were suffering from the reactions from the people in society.

I decided to prove everyone wrong about their “new observation” about me. I continued to go to college and increase my credit hours from 12-18 a semester. I continued to play basketball for the college team. With me wanting to show people I was “normal” I also worked a 2nd part-time job and started to party harder than almost anyone on campus. In doing all of this I was trying to show everyone that “epilepsy” did not change me.  This was what I was allowing society to do to me. They made me feel different when actually, I was doing the same as them. I was able to graduate from college on time and achieve my goals.

Years later after seeing no real change in epilepsy education, I realized that the true problem was not always the “Epilepsy” itself. The real problems came from the way people with the condition were being accepted in society. People could not say the word “epilepsy” in fear that they would be ostracized. The thoughts of not being hired, losing relationships, and embarrassment also accompanied this medical condition. It was just not fair. The reason being is that after my research I found many successful people in society that had epilepsy. People were just not aware of this. These individuals included a US President, actors Danny Glover and Richard Burton, and pro athletes such as Bobby Jones of the NBA, and Jason Smelling of the Atlanta Falcons.  Some of the most intelligent men and woman in history were said to have epilepsy. This information was never shared with me until years later.

With me now being informed about these individuals, I wanted to help educate people about epilepsy. This is when I decided to write my novel, “The Village.” I had to create a character to represent epilepsy because there was no one willing to talk about it. That is including me. This is when I created, “Mr. Kevin Bolden.” This is a very successful, corporate family man who moves into a neighborhood called “The Village.” This neighborhood basically represents society. It has people from all walks of life and mainly, just like society, they were not educated about epilepsy. It was actually the “youth” of The Village that educated the adults on how to “treat others” regardless of their condition that has made the story a success.

IMAG0060The best part about the book is that everyone who reads it can “find themselves” within the story. Either they knew a Mr. Kevin Bolden who had epilepsy, found themselves guilty of discriminating a person with a condition, not being knowledgeable about epilepsy, or one of the “Heroes” that came to the aid of their neighbor. The story truly seems like it is real to life. Basically The Village is inspired by true stories of people from all around the country that I have me in person or on the Internet.

I had to write this book to open the hearts and minds of people about epilepsy because it is known at the “Neglected Stepchild of Neurology.” Many times I found myself and others who had epilepsy experiencing the same discrimination for no reason at all. The many myths and stigmas about epilepsy are still in place and that is just one of the many things that can makes life difficult for individuals who have epilepsy. Truly there needs to be an increase in epilepsy education and I am one that will give my all to see that happen. My goal is to have a movie made to be used as an “educational tool” to help eliminate epilepsy discrimination and bullying.

© Lowell G.Evans

Author of: “The Village”, 5004 Glen Canyon Drive, Virginia Beach, VA. 23462

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