Thursday, April 27, 2017

#ThankfulThursday: Frisco, TX Fundraiser: Charmed by Charity Alex + Ani Bracelets


You're invited to shop with us on Thursday, May 4, 2017 for a Charmed by Charity Soiree at the Stonebriar Centre, 2601 Preston Rd #1053, Frisco, TX! 15% of Everything purchased during this event will be donated to CCA!

Just in time to pick out something special for Mom (Mother's Day is May 14) ... or yourself ... ALEX AND ANI is hosting a charity shopping event for CCA Kids!
ALEX AND ANI creates meaningful, eco-conscious jewelry and accessories to positively empower and connect humanity. ALEX AND ANI shares a passion for the wellbeing of our planet, our communities, and our individual paths. ALEX AND ANI products are proudly designed and crafted in America and made with love...
Please join us on Thursday, May 4, from 5pm - 8pm!

Monday, April 24, 2017

How I Respond To Questions and Bullying

By Rasheera Dopson

Rasheera was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused her to be born with several facial and bodily deformities—resulting in 101 surgeries in my life. Rasheera Dopson lives in Atlanta, GA. Her mission is to empower young men and women in the areas of self-esteem and confidence.  In her spare time she enjoys blogging, watching 90s sitcoms, and volunteering in her local community. Please check out her contributions to The Mighty for more of thoughtful reflections.

When people asked me the infamous question “what happened to your ear,” my mom would always tell told me to tell them. “I was just born like this way”— a phrase that followed me throughout my school-age years.  I hated that question. Even more, I hated my response because, most of the time it didn’t work. Nothing really worked when it came to people questioning me about my facial difference. I always wanted to avoid these situations, but they just kept happening.  

When I was younger, I’d constantly get the stares, the whispers, the glances and glares from other children. Some kids would even be so bold to ask to touch my ear. Of course, I would jerk away, and say a stern “NO!”As always, I would handle the constant questioning by nonchalantly nudging it off, and saying my familiar response, “I was just born like that.” At other times, when it would really hurt, I would go home and cry in my Mom’s arms. It was hard being different as a child and having to deal with other people’s reactions to your face because you are not taught to how to deal with being teased about something out of your control.

People tend to think that once you’re an adult the teasing and bullying stops. I wish that were the case but it’s not true. Although, young kids are more open about their teasing—you know how kids are, the laughing and pointing of fingers.  Adults, on the other hand, are much more coy.  They won’t outwardly ask a question, but you can tell that their minds are turning. Wanting to ask the question “what happened” but never getting the courage to say something because they don’t want to be offensive. Adults may never ask out loud, but they do silently judge.

I’m not sure which version of these judgments is worse, the silent judgement, or the open jokes and questions. I once had a friend in college tell me that one of my classmates referred to me as “crooked face” whenever I left the room.  That hurt. It hurt to know that people were calling me names behind my back and it hurt to know my so called friend didn’t correct him. It hurt to know that people had such a limited perception of me because of the way I looked. And for a long time I embodied those words. I let the words, the stares, the judgements, the teasing of other people break me down that I began to harshly judge myself. Saying silently that I wasn’t smart enough, pretty enough, normal looking enough.

Thankfully, I came to a point where I got tired of feeling sad every time someone stared, called me a name, or judged me too quickly. I made the choice to take responsibility for my difference. I couldn’t sit and sulk around every time someone would ask a question about my ear or tease me.  This was going to happen regardless, and I couldn’t let their ignorance stop me from living my life. What I could do was control my reaction to the judgements and set mental and emotional boundaries. For example, in work settings in order to alleviate assumptions I put myself out there and I make it known to my fellow employee’s and boss that hey I’m a little different and I do have some limitations but this is what I can do and this is what I cannot do.  In social settings I surround myself with people who know me and are comfortable with me. One of the worse things that can happen is when you have a person around you who is uncomfortable with your difference.  When I’m out and hanging with friends and family I don’t have to answer questions about my face or ear. My friends and family around me know me and they don’t make concession for me or make me feel like I’m different.

 I’ve realized in my life that there will be people who will understand and embrace your difference, and then there will be those people who will never get it. However, I don’t get bent out of shape for those people who will never accept or embrace me. I’ve learned that they are not worth having in my life. I’ve learned a very important lesson in life and that is you have to surround yourself with people who see your value as a person, and not just a face.

Thursday, April 20, 2017

#ThankfulThursday: Houston-Area Fundraiser, All The Way For CCA

We are so Thankful this Thursday for our amazing members and donors. The fifth annual All The Way for CCA Golf Tournament will take place on April 28th. Registration begins at 7:00AM at Wildcat Golf Course in Houston, Texas.

Check out the Facebook page for more information and images from last year's event. Register to golf and take part in the days activities on the All the Way for CCA website. 

If you get a hole-in-one, you could win a Harley Davidson. After the round of golf, lunch will be provided, during which an awards ceremony and auction will take place to raise additional funds for CCA.

The event is sponsored by over 18 Houston-area companies. Learn more about these sponsors on the sponsor page on their website.

Many thanks to Becky White and the five other Moms and friends who have made this an exceptional fundraiser for CCA for the last five years.

Wednesday, April 19, 2017

#WonderWednesday: Thanks for Real Life Auggie Skype Calls

Thanks Ms. Walton for participating in our Choose Kind program and thanks to Olivia Sanborn for being a "Real Life Auggie" Check out the Tweet below to see how grateful Ms. Walton was for Livy's service. 

Want to have a Wonder kid call into your school after you have read the book? Contact us, here, at CCA to set up a Skype call or have a Real Life Auggie visit your school. Students can connect by having a conversation with a Wonder-kid, organizing a fundraiser for CCA in their honor, or creating and writing letters to kids receiving medical care for their facial difference. This program hopes to "widen the circle of acceptance" for all kids, but especially for those with a facial difference. 

Monday, April 17, 2017

What Happened When I Took Pride in My Appearance

By Kristin Bartzokis

Kristin Bartzokis is an athlete, artist, and writer.  She was born with Treacher Collins syndrome and documents her life experiences in her blog Diary of a Beautiful Disaster.  Her first book, also titled Diary of a Beautiful Disaster, is available now. You can order it here

Ok, I’ll admit it.  When it comes to my appearance, I’m pretty lazy.  Most weekdays I toss my sopping wet hair up into a bun and head out the door to my job.  In my defense, the alarm on my phone usually starts its obnoxious blaring at 4:30 in the morning so I can go for a run.  My gym opens at five and I’m there when the doors unlock.  I’m home and in the shower by 6:45 and I leave for work at 7:45.  You may think that seems like enough time to blow-dry and straighten my hair, but ask my stylist and she’ll confirm I have about three heads worth of it.  An hour really isn’t enough time to do everything I would need to do and I literally can’t wake up any earlier to fit it all into my normal routine.  I just can’t.

Here’s what I took away from that:
  • One slight modification can alter another person’s perception of me.  Likewise, it can also change the perception I have of myself.
  • Not only did I wear my hair down for an entire month, I also wore more dresses and skirts to work.  On the weekends, I didn’t always reach for my activewear like I normally had in the past.  I actually wore casual clothes that I hadn’t put on in a while.  It looked like I made more of an effort, even if I really had not.
  • People didn’t stare at me as much.  Maybe, though, it was all in my head.  Maybe children stared the same amount but I dismissed it because I felt confident in my appearance.  Maybe not many people ever usually stared at me and I just always jumped to conclusions.  I know that my imperfections are heightened when my hearing aid and malformed ears are visible, so I don’t think I always fabricated the unwanted attention.  But whatever the reason, I felt like I finally blended in with the crowds.  For someone who had stood out all her life, that was a blessing.
  • I found a steady confidence in my appearance, something that typically waivers on a daily basis.  Whether or not I actually walked taller and smiled more, I felt my self-esteem quadruple over the twenty-eight day challenge.  I felt more whole, like I had found a part of me that had been missing all my life.

But I did want to try something at some point.  I wanted to spend an entire month wearing my hair down and taking more pride in my appearance.  My mom once pointed out that I attracted the most stares when I looked like a slob, which let’s face it, was every Saturday and Sunday.  Maybe if I tried a little bit harder, I’d stop the very act that sent my self-confidence into a downward spiral.

At the end of January I decided to take a break from running to nurse an injury and just like that the opportunity for my experiment presented itself.  I began my challenge on February 1st.  I swear I didn’t intend to choose the shortest month; it just happened that way.

The first day absolutely sucked.  There’s really no other way to say it.  It took me forever to blow-dry my hair and then straighten it.  I couldn’t only do the former.  My hair is too thick and frizzy.  It would have swallowed my small facial features.  The process tried my patience, exasperated me, and left me feeling like a hot, sweaty mess.  I wondered how I was going to do this for twenty-eight straight days.  (Thank God I picked a short month!)

I decided to wear a dress to work that day to mark the momentous occasion.  Honestly, I prefer to wear jeans everyday.  I accomplish much more when I am most comfortable, and you guessed it, I’m most comfortable in jeans.  Because I wore something out of the norm and finally let my hair fall freely, my coworkers kept telling me how nice I looked.  I wasn’t comfortable being complimented so frequently on my appearance.  I never have been.  I was ready to go back to being unnoticed after only one day.

I finally washed my hair again on day four (gross, right?).  I’m used to washing it almost everyday because of my sweaty runs.  But without those runs I could go longer in between suds, and lucky for me, my unwashed hair actually looked better on days two and three.  My morning routine wasn’t disrupted when I didn’t have to do anything but blow out my bangs, which made wearing my hair down almost enjoyable.

By day seven, a week after I started my appearance challenge, coworkers were still telling me how fancy I looked.  What’s crazy is that on that specific day the only thing I changed was how I wore my hair.  The outfit I had chosen to wear – skinny jeans, a button up sleeveless shirt, and sandals – had been my staple clothing combination for the last two years.  There was absolutely nothing special about my attire, but because I took the time to style my hair, I looked more put together and polished.  Isn’t perception intriguing?  One slight modification to my appearance changed how people saw me.

On day eighteen, I had another huge personal break though.  Not only had I been wearing my hair down while I was at work, but I also did so whenever I went out in public.  It took me eighteen days, but I finally realized that I didn’t notice as many people staring at me.  Actually, I didn’t notice anyone staring at me.  My mom had been right.  (Shhh! Don’t tell her I said that.) When I wore my hair in a bun, I almost always caught people, mostly children, stealing glances in my direction.  But it wasn’t the case on this day when my locks hung down to my shoulders.

I spent my morning running errands and decided to get a pedicure.  Whenever I’m at the nail salon, I always catch the nail techs looking up at my face. Always.  I suppose I normally look a bit disheveled when I’m there.  My hair pulled into a ponytail, my face makeup-less.  I get it.  But on this day of my appearance challenge, I wore my hair down and had on a tiny bit of makeup.  I didn’t catch a single one of the techs eyeing me or my appearance. It was such a surreal and magnificent experience to be left unnoticed.

As I jumped in my car to head to my next destination, I wondered if that feeling would carry on throughout the rest of the day.  I doubted it would.  I was about to spend the afternoon at a gymnastics competition surrounded by children of all ages.  I loved the sport, but being around that many kids would usually be my personal nightmare.  Once I arrived there, I again noticed that I wasn’t the center of unwanted attention.  No one stared at me, no one whispered about me.  Everyone just left me alone.

What a day!  It was like I finally blended in, something I had wanted all my life.
When day twenty-four rolled around I realized I had been gravitating more towards the Lularoe dresses and maxi skirts in my closet than I had my jeans.  Maybe I was changing more than just my hairstyle.  These dresses made me feel confident yet still kept me comfortable.

By the final day of the experiment, my coworkers stopped making comments about how long my hair was and how pretty I looked.  That hairstyle became the new normal for me.  It was challenging at times.  There were days when I itched to throw it up because I didn’t have much time in the morning.  But I persisted and completed my challenge by wearing my hair down for an entire month.

So what will happen next?  I’m proud of the pride I took in my appearance and I plan on continuing to style my hair more often (and by style I mean wear down, even if I let it air dry).  It definitely won’t be everyday – I like my options – but I now understand the effects that a simple hairstyle choice can have on my perception of myself.  I want to continue to feel like I blend in while finding other facets that allow me to stand out – my actions, my voice, my message.

My imperfections still exist.  I’m not masking them.  I’m simply trying to live a confident life.  I’m trying to be the beautiful person those closest to me see.  True beauty isn’t measured by an attractive physical appearance.  But exuding confidence is certainly beautiful.  When I don’t notice the stares, I forget that I was born with Treacher Collins syndrome.  It’s when I stop noticing the stares that I find myself.

Thursday, April 13, 2017

From the Bench with Francis: Seattle Children's New Technology for TCS

From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith

Craniofacial surgeons at Seattle Children's Hospital have devised a radical new surgical approach to opening the airway in children with severe form of Treacher Collins syndrome (TCS).

Like many other craniofacial syndromes, TCS involves anatomical disruption of the airway due to malformations of the mandible (lower jaw) and other structures that result in dangerous, and often fatal, obstruction of the upper airway. Consequently, children with more severe forms of TCS need tracheostomy to breathe until they can have some form of jaw surgery later on to open their airways.

For over two decades, the standard paradigm for opening the TCS airway has been to bring forward the mandible (and with it, the tongue), either by cutting it apart and repositioning or realigning the jaw with rib grafts, plates, screws, and other hardware (called orthognathic surgery), or in more recent years, by a gradual process of distracting the jaw forward with internal or external distraction hardware that is turned daily for weeks or months postoperatively until the jaw is sufficiently lengthened (this is called mandibular distraction osteogenesis). However, jaw lengthening has a poor success rate.

However, a team of craniofacial surgeons at Seattle Children's Hospital have recently developed a completely new approach to opening the airway in children with severe TCS. Plastic surgeon Dr. Richard Hopper (surgical director of Seattle Children's Craniofacial Center) and his team redefine the syndrome (and its airway obstruction) as actually a rotation deformity of the entire face, not a lower jaw problem. Their experience with severely airway compromised children with a rare form of craniofacial microsomia whose faces were rotated backwards, cutting off their airways so they were no longer able to be helped with tracheotomy, drove the team to devise a new surgical approach--rotating their faces forward in order to open their airways--which they soon adapted to children with TCS.

Called "subcranial rotation distraction," this is a three-stage surgical process taking a year and occurring after growth of the upper face has finished (age 9 and older). In the first operation (the most complex one), the child's entire face is cut free of the skull base (so the whole face can be moved forward as one unit), the jaws are wired shut, and a metal hinge is created at the top of the nose so that a midface distraction device, paired with mandibular distraction devices, can be attached in order to gradually distract the entire face forward over a period of weeks to a month after the initial surgery. During this distraction process (while the devices are activated a little each day), new bone develops and grows within the gradually widening gap between the advancing face and the skull base. Once Dr. Hopper feels that the face has been distracted or lengthened forward enough, the daily turning of the screws stops while the new bone tissue hardens forming a longer upper and lower jaw. After a while, the second surgery involves simply unwiring the jaws so that the child can open his or her mouth again. The distraction apparatus remains in place for two to three months more while the bones continue to consolidate and harden, then in a third surgery, these devices are all removed (and new cheekbones are built from skull bone grafts).

During this whole yearlong process, a tracheostomy and feeding tube remain in place.

Dr. Hopper and his team consider their radical process a greater success in opening the airway because it moves the whole face forward and provides greater stability than merely lengthening the lower jaw, which so often relapses afterwards. He continues to monitor the growth outcomes of the new procedure in his patients through their teen years. His hopes are that the evidence of the success of the new approach will bear itself out and eventually spread nationwide as other craniofacial centers see its success.

Wednesday, April 12, 2017

#WonderWednesday: New 'Wonder' Gear In the CCA Webstore

Happy #WonderWednesday! We've got new shirts...and you need one. (Well, maybe not need, but I am sure you want one!)
New Wonder shirts in the webstore! You can order our new style
"Change the world, Choose Kind" here! All sizes restocked!

Monday, April 10, 2017

Five Life Lessons I Learned From My Orthodontist

By Kara Jackman

It’s funny, you meet people and interact with them on a regular basis, and never imagine your relationship will end. This was especially the case with Dr. B. It never occurred to me that I would, one day, never see him every month, or every couple of weeks. He was a fixture in my life from about age 12 to 26.

The bilateral cleft lip and palate team, during the time I was a patient at the hospital, did not have a psychologist on its team. They did prior to my time of care. It did not matter for much of the time I was treated for my cleft lip and palate issues because I had Dr. B who helped me with these self-esteem and interpersonal issues.

Dr. B. was a person who unknowingly helped me develop my social skills. He allowed me to be snarky, funny, and smart. I felt like I fit right into the world in a way that was not fully realized when I went back out onto the sidewalk or back to school after our appointments.

Here are five life lessons I learned while sitting in the dental chair:

1. Wit and Comedic Timing

Dr. B would love to bring in the dental students and show off his hard work inside my mouth. I would say funny things as they “ooo’d” and “ahhhh’d” as Dr. B explained what he had accomplished. He moved my teeth around quite a bit. In fact, he even twisted one into a straight position, which was his great bragging rite to the students. I remember saying something along the lines of, “he’s pretty great, right?” or “what a guy?” to the five or more gathered students. This happened on more than one occasion. It made me laugh because I always predicted the explanation by Dr. B and the reaction by the students. And I am sure he knew what I was thinking every time.

2. Cultivate Self Esteem and Share Mutual Respect

Most people do not look forward to going to the dentist, but I did, and to some extent still do most likely due to this wonderful, caring doctor. I knew I was going to laugh, show off my quick wit, and converse on just about everything. Many of the others that worked at the clinic treated me like a peer, as if I worked there, not as a child being treated. This was a clear sign of respect. I knew I had value in that environment, so I knew I must have value in the other places, too. When you have a facial difference, the reinforcement of your value in the world is significant to good mental health.

3. Find Allies

I’m sure I talked about friend and peer situations at school with him, and I’m sure Dr. B gave advice, but nothing specific comes to mind. He was a paternal figure in my life that I knew I could count on. You have to have allies when you are different. Whether it be your skin color, or your sexual orientation, you need to know people are in your corner ready to support you.

4. Develop Resilience and Participate In Productive Teamwork

Thanks to Dr. B, I was able to experience pain with some grace and dignity. Many times we both knew it was going to hurt, but we got through it together. I would always close my eyes tight and moan, and he would encourage me to just hang in there to put a little more pressure on those teeth he wanted to move. This was a lesson in resilience. An incident with his colleague, Dr. S, who I also love dearly, illustrates another great example of resilience, and learning to lean on another in time of mental and physical strife. Dr. S. wanted to take some impressions of my teeth to make a mold for one contraption or another that would eventually land in my mouth. Unfortunately, during this series of impressions (a process that is miserable to begin with) some of the composite, or gunky material that would make the mold of my teeth, got pressed up, in between my mouth and my nasal cavity. I was born with a complete bilateral cleft lip and palate, which means that the oral and nasal cavity are not separated by tissue and bone in certain locations. Dr. S. tried, and tried, and tried to get the composite out with the high-powered suction, and an explorer for over an hour. It was extraordinarily painful for me. Finally, both of us were exhausted, pasty white, and waving the white flag of surrender. I got up and felt the need to blow my nose. The composite came out my nostrils. Dr. S and I were shocked, gobsmacked, with our jaws wide open. When my mother arrived at the door to the treatment room she could not believe how tired and white we both looked. And there were many more times with Dr. B. where resiliency and the “we-are-going-to-get-through-this-together” attitude helped us reach the finish line.

If I had enough fight in me, and was resilient for all those procedures, what could the world possibly throw at me inter-personally that I could not handle? A lot. But I got through it.

5. Sometimes Other People Have To Believe In You Before You Can Believe In Yourself

Dr. B always saw the beauty in me. He never questioned me the way I questioned myself. Am I fun? Am I interesting? Do people even want me around? No, Dr. B did not question those things at all. I learned that I was fun, interesting, and that people do want to be around me. How did I know? He treated me as a friend, not a patient. He showed me my worth by how he chose to interact with me. His example spoke louder than words. This is one of the greatest gifts a person can give to another that by all outward appearances is different.

He was the dentist that tweaked my teeth, my self-esteem, and my life. I will always be thankful for these gifts. Thank you, Dr. B.

Friday, April 7, 2017

How To Childproof Your Home

This is a great infographic from our friends from across the pond at Radiator Valves 4U. Every room is covered and some additional product suggestions can all be found here. Everyone needs a refresher on safety, right? What better time than now. The images and presentation of this information is fun and informative.  Stay safe! Enjoy!

Childproofing Your Home by Radiator Valves 4u

Childproofing Your Home by Radiator Valves 4u.

Thursday, April 6, 2017

#Thankful Thursday: Houston Area Event Alert: Evenings With Genetics

By Kara Jackman

This week we are thankful for all the pioneering doctors, researchers, and advocates that make new discoveries about genetics disorders and diseases. On Tuesday, April 18, at the Children's Museum of Houston powerful people will come together to discuss the treatment and science surrounding Craniosynostosis. Attendees will have the unique opportunity to learn more about this rare genetic condition. Our own Erica Mossholder, CCA Executive Director, will speak alongside Dr. Edward Buchanan and Haley Stroff, MS, CGC both of Baylor College of Medicine. The event is free, but registration is required. Visit this link to register

The series of events called Evenings with Genetics is an opportunity for the Baylor College of Medicine and Texas Children Hospital, "to highlight the advances in genetic research as well as encourage networking within our community.

Many past seminar videos and future events can be found at the Baylor College of Medicine website. Baylor provides lots of great research and information for everyone, both in Houston and beyond. 

Wednesday, April 5, 2017

#WonderWednesday: Casting Call For Wonder Performance at Retreat 2017

An offer so Wonder-ful, I thought we would post about it again! Please contact us if you are interested. 

We have some exciting news to share with you! Longtime CCA Retreat attendee and performing artists, Bianca Moon, has teamed up with Director Edward Edwards and Ed O’Neill (Modern Family, Finding Dory) to record an incredible song, aptly titled "The Wonder Song." This song is inspired not only by the book and film, but more importantly it is a love song to CCA Kids!
Bianca will be performing this song during the Dinner/Dance on Saturday, July 1st, and we need your help! We are looking for Retreat Attendees to be participants to sing and perform this song with Bianca! If you are interested, you will be sent the lyrics and a recording of the song. You will be responsible for learning the song prior to the retreat. You will also be required to attend a performance rehearsal during Retreat. The exact time may vary depending on the number of participants, but the block is planned for 11:00am-4:00pm on Friday, June 30th. (Note: This rehearsal is during the Water Mine Park off-site activity and you must be attending the 27th Annual Family Retreat & Educational Symposium.)
Please contact us if you want to participate, sign up for Retreat, or have any questions at all. This is a fun and unique opportunity for our kids and sibs who enjoy music, singing, and performing! 

Tuesday, April 4, 2017

CCA Adult Gives Outstanding Speech

We are so proud of our very own, CCA Adult, Christine Clinton.

She had the opportunity to speak at the 7th Annual Winter Gala for The Goryeb Children’s Hospital Craniofacial Center in conjunction with Morristown Medical Center hosted an evening to benefit infants and children born with facial and skull conditions on Thursday, March 23, 2017.

You can see a video of her speech here and photos from the event. We were happy to send our Program Director, Annie Reeves, to the event to support Christine and meet the team in New Jersey, including Dr. Mazzola

Well, done Christine! Check out that standing ovation at the end!

“I think there should be a rule that everyone in the world should get a standing ovation at least once in their lives.”  - Auggie Pullman, Wonder