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.


Tuesday, February 24, 2015

Life has a Learning Curve

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 Penny Loker from Kitchener Ontario, Canada. Penny loves knitting, reading, and her dogs. Check out her blog here:

Come back all week for inspiring stories of people who individually may be rare,
but are creating a strong community together. 

Life Has a Learning Curve

When I was born, the doctors didn't really know what had happened and they struggled with a diagnosis, so I came away with not one but lucky am I? ;) Living with a diagnosis that no one else has been born with has been a pain, but in the last few years it's been an odd blessing. I have met with others with one or the other but none that have both of my conditions.

I'm learning that being a little extra unique may not be as bad as I thought. I still struggle with acceptance from society and on the roughest of days acceptance from myself. But I know that I am who I am in part of because what I was born with. Although it's not WHO I am it has shaped the person I have become and who I continue to grow to be.

Having a rare illness means always having to be the strong one, to put one foot I front of the other a little faster than those around you. You learn quickly how to be your own advocate or how to be the advocate for your child because you have no other choice, well guess that isn't true, there is always another choice but I can't think about those. Never knowing when the next shoe will drop you learn to never take anything for granted and to live each day to the best; you learn how to love fully and completely.

Having a rare illness also means loss: you find yourself watching your peers doing things you would never be able to do, you envy who you may have been and you grieve for the life that could have been yours. It means learning that life isn't always fair and to know when you have met your limits, and how to cope with the realities that others can't imagine ever having to know about. It also means depending on people when the only thing you want is independence.

Everyday is a new day to learn something, to meet someone who may change your life. Everyday is another day to be allowed to make this world a better place, whether you were born with a rare illness or not. When you get the chance to learn about someone with a rare illness, don't pity them, don't feel sorry for them; help them, advocate with them, learn and be the person you are as a tribute to all those around you.

I am who I am, I'm flawed, I am complex, I am human!


Monday, February 23, 2015

There's No Road Map for "Rare"

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 Rachel and her daughter, Shierry. 

Come back all week for inspiring stories of people who individually may be rare, but are creating a strong community together. 

There's No Road Map for "Rare"

My daughter’s face shows everyone who looks at her the effects of a rare, somewhat mysterious, syndrome called Amniotic Band Syndrome (ABS). ABS attacks a fetus in the womb by damaging the amniotic sack in such a way that microscopic, sticky fibers or bands fleck off and wrap around or latch onto the tiny body. ABS bequeathed to our daughter a Tessier 4 facial cleft, a Tessier 5 facial cleft, a complete palate cleft, and banding around her right ankle. She has undergone three craniofacial reconstruction surgeries. She is 18 months old. There has pretty much never been a moment during her little life in which we did not have a surgery scheduled. Next one’s in June! She has therapist and doctor appointments every week. 

No one, not even the weird parts of the internet, has been able to explain to us what caused the ABS. We know it happened in utero before the 20th week, but other than that, we don’t know when it happened. We won’t ever know why it happened. Her surgeon is a genius, the work he’s done is almost unbelievable. But, hardly anyone in the history of ever has had both a Tessier 5 and a Tessier 4 cleft; he is sort of making it up as he goes along.

People stare. Adults are usually decently enough behaved. Kids are harder. They have literally never seen anyone who looks like her. They gawk, whisper, even cry. 

I don’t know how any of this is going to affect her. She’s a bright, outgoing, ridiculously open kid. I fear that other peoples’ behavior will cause her to turn too far inward. I fear with every surgery that I will lose her. But for now, she’s thriving. There is no road map, we take it one surgery and specialist at a time. She has recovered from every surgery. She goes to preschool and dances and runs and hollers along with the other nutso toddlers. She works so hard in speech therapy, she passes out on the drive home. She mostly keeps her glasses on. She falls all the time because the banding around her ankle disrupts her balance, but she just hops up and laughs. I could not be prouder to be her mom. 

No one can ever know what a parent of a child with a rare disease is feeling on any given day, often not even other parents of special kids. But, hopefully with the ever increasing awareness of our kids and their challenges, the world will come to embrace them for who they are as individuals and appreciate them for what they’ve worked through and accomplished.  


Friday, February 20, 2015

Yankees to Retire Jorge Posada's Number

CCA wishes a BIG congratulations to Jorge Posada, whose No. 20 jersey will be retired on August 22. Having his number retired is a tribute to Posada's importance to the team and the sport and he expressed his gratitude on Wednesday night saying, "When you think of the people who have had the number retired, you think of [Babe] Ruth, [Joe] DiMaggio and [Mickey] Mantle, and I will be right next to them. I am very honored."

Through the years, Jorge Posada and his foundation have also been very important to us. They have generously donated to CCA and provided critical funding that serves our families. We truly appreciate their support in serving families with craniofacial differences. 

Congratulations, Jorge! Thank you for being a Hero for Hope!
photo from Facebook

Thursday, February 19, 2015

#ThankfulThursday - Charles Schwab

This Thursday, CCA thanks , GOLD sponsor at the last "Links of Love" CCA golf tournament! Thank you for your support which enables us to serve families all across the country.

Join us on Twitter and tweet what you're grateful for every Thursday!

Thursday, February 12, 2015

#ThankfulThursdays: Bristol-Myers Squibb

This #ThankfulThursday, CCA is grateful to Bristol-Myers Squibb for matching employees' donations to CCA. Their generosity doubles the impact of one donation and helps us serve more families affected by facial differences and spread kindness in schools and social spaces!

Check and see if your employer matches donations here. If they don't, you can ask them to!
If you're interested in matching your employees' donations, contact Jill at the CCA office.

Monday, February 9, 2015

It's Random Act of Kindness Week!

Calling all #ChooseKind ambassadors ... it's Random Act of Kindness Week 2015!

Did you know that practicing kindness reduces anxiety, depression, and blood pressure? Check out the science behind kindness.

So, exercise your kindness muscles and choose a small act of kindness.

You can also SHARE it with us! Tag us on Facebook and Twitter and together we'll flood social media with kind posts.

Use the hashtags:

#RAKWeek 2015




Need some inspiration?

Check out this nifty Greatist's Kindness Calendar, and tweet us your ideas.

Friday, February 6, 2015

#giveRARE day is coming!

On March 3, we will join with the 30 million Americans affected by rare diseases. The day, #giveRARE Day is an online fundraising event, with corporate sponsors and prizes for the most successful nonprofits.

In preparation, we're spreading the word about rare diseases and our fundraising campaign. You can save these images below and share them on Twitter, Facebook, & Instagram.

Check out our #giveRARE campaign page here, which will be updated frequently this month and until March 3! Let us know if you want to sign up to host your own fundraiser as a RARE Champion!

Thursday, February 5, 2015

#ThankfulThursday - USA Environment, LP

It's #ThankfulThursday again!

CCA is thankful for the USA Environment, LP a past Diamond Sponsor of "All the Way for CCA" golf tournament, in Houston, Texas. Their generous support helps make our event a success and helps CCA Kids across the nation!

This year's event is coming up on April 24, 2015!