Sunday, March 1, 2015

The Road

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's inspiring post is from Frederick Seitz. Come back daily until Tuesday for real life stories of people who individually may be rare, but are creating a strong community together. 

In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun. 

Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point. 

Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.

From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

That really sums it all up. 

Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.


Saturday, February 28, 2015

Real Life Auggies & Vias

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's video is from Peter Dankleson, our first "Real Life Auggie.Come back all weekend for inspiring stories of people  who individually may be rare, but are creating a strong community together. 

Watch Peter's fun video below and be sure to read some of his mom's, Dede, posts linked after the video.

Another great piece we came across this week is "The Unseen-Siblings of Special Needs Kids." We think you'll agree, siblings' needs are definitely a part of living in a family affected by #RareDisease.

In fact, one big part of CCA's efforts is creating a supportive community for siblings of kids affected by facial differences. Having a brother or sister with a rare disease or difference comes with its own set of challenges, and CCA seeks to address the psychosocial needs of the entire family
Enjoy this moving piece from

And don't forget to schedule your donation for March 3, 2015.

Friday, February 27, 2015

Now I See Only Me

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Sabrina Robineau. Come back all weekend for inspiring stories of people 
who individually may be rare, but are creating a strong community together. 

When I was a little girl, I would look in the mirror and stare at this ‘person’ in front of me. As I stood there, looking at my reflection, it always left me feeling confused. Who was this girl? Why did she look so different from her family and her friends?  From a very young age, I constantly questioned: Why me? Why was I born with this syndrome? Why couldn’t I have looked like my mom? who I thought was incredibly beautiful.

It is tough growing up with a rare syndrome. Not only do we have to go through many medical procedures, we also have to deal with the stares and the teasing. Even though I was fortunate to have had great friends in elementary school, I still got my share of stares in public and I was teased at summer camp. There were times when I came home crying and wishing I hadn’t been born with a syndrome. I hated that I was different. I just wanted to be the same as everyone else.

At 25 years old, I no longer ask “why me? Why was I born this way?” It took me a long time to accept myself for who I am on the outside. When I look in the mirror now, I don’t see a person with facial differences, I only see ME. The face I see is ‘Sabrina.’ This is who I am. My toughest challenge as an adult living with a rare syndrome is trying to understand why society sees me as ‘different.’ I may feel ‘normal’ on the inside but the stares I get from the outside world serve as a constant reminder - “oh yeah, I’m different.” Most of the time, I shrug it off and ignore these reminders. But of course, I have bad days too, where I feel frustrated and upset. However, I try to have very few of these days because I don’t want to let others make me feel bad and ashamed for what I look like on the outside. There is nothing wrong with how I look. My syndrome is a part of who I am and without it, I wouldn’t be the same person I am today.

Since I have accepted and embraced my differences, it has made me more determined to educate others about facial differences. I want the world to know that just because some of us look ‘different’ from the norm, it doesn’t mean there is something wrong with us. A teacher once told me “When someone stares at you, it means they are the ones with a problem, not you!” Whenever I feel frustrated, I replay that comment in my head and it makes me feel better.  When people are faced with the unfamiliar, they sometimes don’t know how to react. That is why it is important to spread awareness about rare diseases because the more people who know about it, the more acceptance we will gain from society. Maybe one day, we will live in a world where we won't be judged for how we look. 


Thursday, February 26, 2015

Humor Gets Me By in Life

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Casey Deakins. 
Come back all week for inspiring stories of people who individually may be rare, 
but are creating a strong community together. 

I hate the word “disease.” It makes me sound like I should be isolated in a room with contact protocols in place by the nursing staff and visitors having to wear yellow gowns, masks, and gloves to enter the room. 

Disorder”… while still unsavory to me, is a closer term to describe myself. Myself is Casey McRae Deakins, born in 1986, making it into that year by mere days. I’ve always been known to do things in my own, unique, way. Some may describe my personality as goofy. Yeah, goofy works. I’m just a 28-year-old who hasn’t figured out, or doesn’t want to accept, that my childhood is gone. I guess I watched too much Robin Williams in my life and saw that humor does wonders to lighten moods. 

While now I know that there are some situations where I have to be an “adult," humor gets me by in life and helps me deal with the everyday chaos (like rush-hour traffic….oy vey!). And the good news is, I like being me … I get a kick out of making people laugh and seeing their face light up. It makes me feel like I’ve done something right. 

Here’s another side of me: I was born with a congenital condition known as Apert Syndrome. Basically, before I was born, my skull bones prematurely fused, along with my hands, toes and partially my shoulders and elbows. Even now, in 2015, this fusion happens with 1 in every 100,000 births. My syndrome is a cousin to Crouzon Syndrome, and many others. Basically what happened is a gene mutated and viola, I was created. I had my first surgery at 3 months old: a skull surgery to make room for my growing brain. I still have the scar from that, too, though it's hidden by my hair and faded. 

I have lots of scars from my 20+ surgeries. My hands and feet are riddled with them. I had Apert Type 1 in my head (we think) but my hands were type 3, the most severe form. I lacked the muscle and blood vessels to get 5 digits, though I’ve done well with my 4 nubs. They can drive a car, control a horse, play the piano, draw, paint, type 68 words per minute, and much more. 

At age 13, I received another diagnosis: Asperger’s Syndrome (on the Autism spectrum). While things now are greatly improved from even 2 years ago, I still have trouble looking people in the eye. Crowds bug me, especially when mixed with small spaces. Throw loud noises into that mix and good luck getting me inside those doors! However, I can make exceptions and self-accommodate. It's a skill I'm learning and practicing. Plus, I’m loyal, kind, loving, and compassionate ... in part because of what I've experienced in my life. 

Overcoming some of my issues may take time, but if I open myself up to you, you’re family. No if's, and's, or but's. Now, that is not to say I’m going to spill out my secrets, but it means that I feel okay being me around you. I don’t have to worry about being judged because I can’t look you in the eye or because my hands look “weird.” Family and friends are everything to me. My world goes ‘round because of them. I am at my happiest when I am with friends and family. They are my constant supporters, encouragers, and much more. It's imperative to have good people in your life... even if you have to make the effort to find them.

On Tuesday, March 3, please remember that everyone is different. We all have our own “quirks” that may be "rare." But no matter how different we are, we're stronger together. Please spread the message "Choose Kind" on March 3 and everyday. That is my request to you! 


Wednesday, February 25, 2015

Rare, but not Limited

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Dianne Woehnker. 
Come back all week for inspiring stories of people who individually may be rare, 
but are creating a strong community together. 

I was born in 1982, and at that time, few doctors had heard of CFND (Craniofrontonasal dysplasia). The doctors in our hometown referred us to Riley Hospital for Children, in Indianapolis, IN. I was the only patient there at the time with CFND, so my case was extensively documented by the doctors so they could use it to further study CFND and develop appropriate treatment options.

Throughout my childhood and adolescence, I had a total of 13 major reconstructive surgeries on my face and head. Often when I tell people this, they say they can't imagine how a child could go through this much trauma. What they don't know is the dedicated team of medical professionals cared for me physically, emotionally, and spiritually. They treated me like family, and they gave me hope for a normal life. I am not limited in any way from living an independent lifestyle. The hospital is where I had shelter from the unkind words of kids and adults that I experienced in my life. I learned that I am not defined by my CNFD.

In today's world, anyone who looks different is often treated with less respect than people without a facial difference. I want to encourage others with facial differences, that you can have a normal life.
There are a lot of beautiful people who have facial differences! I have been sharing my story with others in my community in the hopes of teaching them that true beauty lies from within.