Wednesday, December 25, 2019

And Visions of Sugar Plumbs Danced In Their Heads...Many Thanks To Gingertown



The sights and sounds of the season never looked so tasty. The Gingertown tradition continued at Dallas' North Park Center
benefitting CCA again this year. This December the contractors, architecture firms, and urban planners all came together to build a town made of gingerbread, candy, and other edible delights. Even some of our local dallas-based families were part of the fun. They built alongside local professionals, creating trees, houses, and other elements of the town.  

Every company or firm that took part in this year's festivities received an apron complete with CCA and Gingertown logo. This year's theme was Venice. Many of the buildings and towns looked like those found in the Northern Italian city. 


On December 10th, Jono Lancaster, friend of CCA and motivational speaker, made his second consecutive appearance at Gingertown. He spoke about kindness and acceptance to the gathered crowd of builders, shoppers, and CCA friends. 

We are so grateful to Nancy Nasher, President and co-owner of NorthPark Center, for her continued support of CCA. Also, we are grateful benefit from all of the local businesses and companies that make Gingertown come to life every year. 



#WonderWednesday: Jono and CCA Staff Visit J.C. Austin Elementary School

On Monday, December 9, the CCA Staff along with Jono Lancaster visited Lilianna, Abigail, and Joseph Hernandez's school, JC Austin Elementary School in Mesquite, TX. We were escorted by the Assistant Principal, Ms. Jane Freeman and Brie Hernandez, CCA Mom, who was a wonderful advocate making this visit possible! 

Our time at the truly kind and welcoming Austin Elementary was amazing. Three grades (3rd-5th) of 215 students sat rapt with attention for over 50 minutes in assembly - a huge accomplishment in itself, as Jono told his story of growing up hating the way he looked, with bold truth and quite a bit of humor, too. He encouraged them with three stories of people who made an impact on him as a young man - three people who saw him for who he was and made positive comments about his face. He challenged the students that they could be any of those three people to someone - and they may never even know it. The power lies in telling others what you find amazing, special, beautiful and unique about them. They can change someone's whole life with a kind word or a friendly listen.

Then, in the classrooms, the students proved how attentive they actually were, asking follow up questions with incredible detail, heart, and depth. Jono patiently answered them all and encouraged them to speak up and talk to trusted people (teachers, parents, and friends) when things are hard. Bringing the pain to the surface and talking about it is healing; bottling it up inside hurts both the person with the pain and the others who are trying to help them. 

After all the questions were asked, all the classrooms were visited, and all the favorites were compared (what's your favorite food... color... place to go... sport... video game...), Jono left but not before he gave out his own homework assignment!  He told the students that they needed to think of one thing that they are scared to say out loud and to write that down. After taking some time to really think about it, he encouraged them to share it with someone they trusted. The second assignment was to write down something they truly love about themselves and to put that in a special place - a bathroom mirror, a bedroom wall, or maybe their desk, and to look it at daily to remind themselves how special they are to this world!

Sunday, December 22, 2019

30 Stories 30 Faces 30 Years: The Wojtyniak Family




When you have a child born with a craniofacial difference, there are so many questions and feelings that you are faced with. CCA provided me with not only information but a sense of family and community. I believe wholeheartedly in the mission of CCA and have chosen to support this organization as much as I can. My appreciation runs very deep. My family has grown close and developed strong relationships with other families who have had similar experiences that we would not have known if it weren’t for CCA.  Thank you, CCA for all you do for so many!

-Angela Wojtyniak, CCA Mother 

L-R Brent, Colton, Brooklyn, Angela

We are very grateful to have Brooklyn and her mom and dad, Angela and Brent, as part of our CCA family. In the short time that they have been members of our community, they have had a tremendous impact. In 2012, months after the birth of their first child, Brooklyn, Angela and Brent sought us out on Facebook, while researching everything they could about Crouzon syndrome. The family benefitted from all of our virtual and in person love from the very beginning, all the while giving back where they could to the community that gave them so much. Then in the Fall 2018, the Wojtyniak's hosted the first Spreading the Love for CCA...it's the Brooklyn Way Golf Tournament in Livonia, Michigan. The fundraiser brought in over $17,000 for our kids. Then in 2019, the Wojtyniaks blew us all away with a second round of their golf tournament. This time it raised more than $20,000! More importantly the entire Livonia, Michigan community embraced the family's efforts. Local businesses and stores contributed gift baskets for raffle items or sponsored one of the 18 holes on the golf course. Regional CCA families came together for the day, too, strengthening connections, building bonds of acceptance, and leaving with the reassurance that they were not alone.
The Wojtyniak Family

Proud of her community, Angela says, “It was important to us to raise our children in the community we were raised, with our families close by.” Brent and Angela were born and raised in the Metro Detroit area. Brent earned his Bachelor’s degree from Michigan State University in Turf Management. He is the operating manager for Green Arbor Supply, which is a fertilizer company.  Angela has a degree in Psychology from Western Michigan University as well as her Masters in Counseling from Oakland University. Angela has worked for the Livonia Public Schools for 13 years. During the last nine years, she served as school counselor at Stevenson High School, a role she very much enjoys. Their daughter, Brooklyn is seven and attends first grade at Buchanan Elementary School. Brooklyn was born with Crouzon syndrome and hydrocephalus. She’s had over 20 surgeries. Angela affirms that "none of them have slowed her down. She is full of energy, absolutely hilarious and brightens every room she steps into. She recently started tap dance classes and loves it!" Brooklyn's brother, Colton, is the family's "little Bubba man." Mom says, "He has more energy than all of us. Coltie completed our family and is an absolute joy. He loves all things automotive, including trucks, cars, ambulances, and diggers. You name it, he is captivated by it." Despite living in chilly Michigan, the whole family enjoys the summer best when they have the opportunity to take daily swims in their pool.

Sassy Brooklyn!

Wojtyniak family, thank you for being part of our fold. We look forward to all the joy your family brings to ours in the years to come. Keep raising awareness and love for CCA in the ways that you know best.




Sweet Brooklyn!







CCA Celebrates Holidays With Sounds of The Season At Dallas Symphony




The inaugural C-Suite Christmas on December 11, 2019, at the DSO was a magical event! The event celebrated one of Dallas's most amazing qualities: Partnerships between business and the arts. Seven CEOs came together and each selected a special nonprofit to attend this event. Nancy Nasher, Owner and President of NorthPark Center, chose CCA and 67 CCA members signed up for complimentary tickets to the event. Dressed in our best, we made our way to the Morton H. Meyerson Symphony Center where we had a pre-concert reception with refreshments and cookie decorating. We had time for our families to mingle and then we made our way to the hall and heard all of our favorite Christmas songs - punctuated by performances from the special CEOs themselves! Who knew about their hidden talents?! We were especially impressed with Ms. Nasher's performance as guest conductor for the holiday favorite "Sleigh Ride!" The magical evening was capped off when Santa came out into the audience and we all sang a silly version of the Twelve Days of Christmas, featuring very brave audience members and a delightful snow fall from the symphony hall rafters. Then we were sent on our way into the chilly, Dallas evening with warm hearts, full of the holiday spirit. 

Michael Brown
Coming together as a CCA family is a very special and treasured part of our community. We are so grateful to the families who joined us: the Jacksons, the Alveys, the Browns, the Rantras, the Greers, the Carlisles, the Kimberlins, the Hernandezes, the Andlers, Jono Lancaster, and Erica Mossholder, the Johnson family Greg, the Landeros family Jennifer & Jaden and the Owen family

The Kimberlins with Jono Lancaster
Thank you to the families who joined us and especially to the incredibly generous Nancy Nasher and NorthPark Center family who made this past week a true celebration of the season with their incredible hospitality and generosity. We also appreciate the Kim Noltemy, Ross Perot President & CEO of the Dallas Symphony Association, the amazing performers and supporters of the DSO and conductor Lawrence Loh, the generous sponsors who contributed so generously to the event's fundraising, and the inaugural class of executives who came together to make this evening so special and successful for DFW organizations and the arts. Merry Christmas! 
Michael Brown and Chloe Andler, Assistant
Director of Development and Joy

Dallas Symphony Orchestra Stage

Monday, December 16, 2019

30 Stories 30 Faces 30 Years: Frederick and Sabrina Seitz






We've all heard the expression – "Sometimes what you're looking for is already right in front of you." Little did I know that I would find my soulmate through CCA. 

I had always known who Freddie was, I would see him around at the CCA retreats but we never interacted. That was until, the dinner and dance in 2014. I will never forget when the slow song came on, Freddie walked up and put his hands out towards me. I smiled and nodded, accepting his invitation to dance. From that moment, our friendship began. Never did we imagine that 5 years later, we would have another first slow dance... as husband and wife. We are truly grateful for CCA for providing us the opportunity to meet others who were born like us, to form special bonds with families and for helping us find everlasting love.                                                 

-- Frederick and Sabrina Seitz, CCA Adults

CCA works hard to bring families, children, and individuals with facial differences together so no one ever has to feel alone. That said, we never could have imagined that two, wonderful people from two different countries, would fall in love and get married. This exceeds all of our expectations. We must be doing something very right. It is an honor to celebrate the love story that is Fred and Sabrina’s.

Fred and Sabrina have known each since 2005, the year Sabrina attended her first Annual Retreat. They would talk from time to time, but clearly it was not until 2014 that their friendship tranformed into something more.

Fred is originally from Poland, Ohio. He was born with born with Goldenhar syndrome (hemifacial microsomia), but does not let that define him. He recently moved to Bloomington, Indiana after accepting a position working with the United States government as a systems engineer. He enjoys video games and is a self described aviation enthusiast.


Sabrina, from Gatineau, Quebec, joined him in Bloomington, shortly after they were married in August 2019. She was born with Pfeiffer syndrome. Sabrina is working on getting her citizenship so she can begin working in the United States. For now, she volunteers working in education with kids from pre-kindergarten to sixth grade. She enjoys going to the gym and other forms of self improvement, like writing and reading. Together, they enjoy spending time together with their cats, hiking nearby trails, and traveling, a hobby they embraced as many others do through CCA’s many Annual Family Retreats located in a different city each summer.

Being born with a facial difference has affected each of them differently. Sabrina says, she felt very alone and that CCA put an

end to that feeling soon after attending her first retreat, “I thought I was the only one who was born like this. I had never seen anyone else around me with a facial difference. I didn't find CCA until I was 16 years old and that's when I finally met others with Pfeiffer Syndrome. My 1st CCA retreat in 2005 opened a whole new world for me. It was the best feeling to meet others who looked like me and had been through the same things I have.” It has not been an easy road and has taken its emotional and mental toll. Still, Sabrina keeps her chin up saying, “Aside from the many surgeries and medical procedures, there have been social and emotional challenges as well. I have been judged by others, talked down to and discriminated against. On the other hand, being born like this inspires me to educate others about facial differences and to help spread the message that we should all be more kind and accepting of one another, regardless of how we look on the outside. Overtime, with the love, support and encouragement from my mom, I have learned to embrace my differences. I believe we are all unique in our own way.

In contrast to Sabrina’s many years before finding CCA, Fred began attending Annual Retreats from a very early age. He says, “I attended my first retreat when I was 3 years old. I was very

fortunate to grow up with the organization from the beginning as it has helped me form a deeper perspective than most kids during those formative years since I was exposed to a broad variety of kids who had craniofacial differences like I did. Meeting other kids

especially those with Goldenhar Syndrome at a very young age taught me that I wasn't alone and that there wasn't anything to fear.” He, too, felt the pain of bullying, but he always knew he had the support of his CCA family behind him during those dark times, “Of course, I had been through the experience of being bullied by other kids but thanks to my supportive parents and extended family, I didn't let the bullies bring me down because I was the reason they eventually changed their ways. Today as an adult, whenever I go out into the public and see people staring at me - I just smile & wave even if people give off "shocked" reactions. The way I see myself is simple - I am a person like everyone else, except that maybe I do look different. So what? I am a person with my own thoughts, personality, intelligence, life experiences, feelings, and dreams.” 


As you can see, being born with a facial difference affects the way they see and are in the world. Sabrina shares more on this, "It has certainly made me more anxious and cautious when meeting new people. To this day, I still get nervous and wonder "do they notice something different about me as I'm speaking to them? Will they think I'm incapable of doing certain things because of the way I look?". I am still a work in progress when it comes to my confidence and self-esteem. However - I have also seen how incredibly accepting some people can be. There have been certain situations where I felt very welcomed and treated equally like any other typical person - and this meant the world to me. I do feel that society is becoming more accepting as time goes on and it will keep on getting better the more we raise awareness for facial differences." 

While Fred has a different perspective with regard to communication barriers and how his facial difference has changed the way he looks at the world, "When I meet new people, I always make it a point to be bold and approach them just like anyone else would even though I always have to fight through the communication barrier because of my deafness. I always find a way to make something work no matter what. Because of my parents and how I grew up, I learned to never let anyone mistreat me or interfere with my life pursuits even if they're clueless/ignorant. I learned to be ruthless only when necessary in certain situations where there are barriers that shouldn't be there in the first place. Whenever I pursue a specific life goal, I always find a way to keep going no matter what. There will always be some good people out there who see me for who I am and treat me with the same respect as everyone else and support me in life pursuits. While our societal perceptions are improving as more and more people become aware of those with craniofacial differences, I still remind myself that we have some work to do because ignorance still exist in pockets of the today's society."


Sabrina and Fred are a beautiful couple with a special bond. With their collective life experiences, we are confident that they will be able to support one another through almost anything that may come their way. CCA is proud to have you both as members of our community. Thank you for sharing your stories to celebrate our milestone 30 years of service.

Tuesday, December 10, 2019

#WonderWednesday: Jono Inspires Us To #ChooseKind In Southern California And Texas


 

Jono Lancaster visited three Southern California schools in the middle of October. He spoke to over 1200 students and staff at Brookside Elementary School, Ana Haus School, and Highland Academy. Jono was invited to his first stop, Brookside Elementary School in Beaumont, California, by Knox Cloes and his mother, Sarah. He spoke in an assembly to 300 students about his facial difference, how the students can be more accepting to those that appear different, and finally how they can choose kind each day.  From the many photos that were taken during the day, many of the students received one-on-one time with Jono after his presentation. They talked in small groups indoors and during recess. 

Later that same day Jono brought his message to Angelica Batres' school, Ana Haus School, also located in beautiful Beaumont, California. There he spoke to 720 students in pre-kindergarten to sixth grade classes. The students of this school community embraced him, too. 


On October 21st, Jono visited Highland Academy to talk to Jordan Watkins' classmates about differences, acceptance, and kindness, too. He was invited by Dorina Watkins and some of the teachers at Highland. The school's director commented about Jono's presentation, "It was engaging and fun. The openness of the presenter really made an impact on the students. It was thorough, yet brief enough to hold their attention.”

Jono made another visit to the United States from his home country of the United Kingdom this week. Yesterday and today, Jono visited schools in Dallas-Fort Worth. He also addressed visitors to the NorthPark Center Gingertown build event last night. Each year, Dallas-based contractors, construction companies, and urban planners come together to build an entire city out of gingerbread houses. The effort helps raise money for CCA Kids. We are extraordinarily grateful to Jono for being part of this event for the second year in a row, but most especially to the NorthPark Center mall for their continued support of Children's Craniofacial Association programming through the Gingertown event. It is a fine way to celebrate the season and our kids. 


Wednesday, December 4, 2019

#ThankfulThursday: Friends of the Wojtyniak Family Raise $200 With Hot Dog Funder

Adriana Sapia and Emily Rentis with their check for $200 before
mailing to CCA! Photo Credit: Angela Wojtyniak


Many thanks to Adriana Sapia and Emily Rentis of Stevenson High School in Livonia, Michigan for hosting a hot dog fundraiser in collaboration with Leo's Coney Island in Livonia on November 19th. Fifteen percent of sales from the day went to CCA Kids. The students and their hungry visitors raised $200 in honor of local CCA kid Brooklyn Wojtyniak. We thank you, Adriana and Emily for your generosity. Thank you Brooklyn for making positive connections with people locally to help us at CCA Kids globally. Great job!



Tuesday, December 3, 2019

Jenifer Ihm Writes Books To Bring 'Comfort and Joy' Before Surgery


Some writers become authors over night, but Jenifer Donatelli Ihm of Chicago, Illinois became one at night. She finds herself most inspired to write in the middle of the night. Her son was born with cleft lip and palate, but her stories have a broader reach to other kids born with facial differences. 

Jeni with her husband and kids!

This accidental author wrote her first book with Missy Lavender, with the support of the Women's Health Foundation, for girls about their pelvic and reproductive health. The book is called Below Your Belt:  How to be Queen of Your Pelvic Region and helps to navigate pre-teen and teen girls through the changes their body makes as they grow older. It guides the reader through an exploration and explanation of the pelvic region, reproductive organs, and bowels. Health, fitness, and nutritional advice is given with whimsy and humor.

After that positive publishing experience, Jeni wanted to write more, but this time she chose to draw from her personal experiences. She has completed three separate texts for children, like her son, born with facial differences. She hopes these books will calm their nerves before surgeries, empower them to feel superhero strong because of their smiles, and know that a universe of angels surrounds them with positive energy as they forge head on through their medical journey.


Each book was written in the evening, the words seemingly just coming to her in a series of moments of clarity. Jeni's hope is that there is an illustrator out there that could bring her words to life, so that they may one day become children's picture books.

Here is the text of her most recent writing endeavor called "Superhero Smiles." If you happen to be a publisher, illustrator, or book agent, Jeni might like to hear from you. :-) 

Have you ever noticed when someone smiles at you, it’s hard not to smile back?
Sharing a smile can brighten your day and make someone feel good. Smiling at a friend who’s sad might help them feel better faster than anything else possibly could. 
Smiling on the outside makes your insides smile too. Smile every chance you get, it will help you feel amazing and cure your blues.

Try skipping without smiling. It’s kinda hard, don’t you think? Some people don’t like to smile, instead they just wink. Some people don’t like their teeth, so they try not to show them by hiding their smile. We say give it a try, smile, and be brave for just a little while. 

Everyone has their own special smile to share. Go on and simply smile, if you dare. Turn the page and discover the wonderful world of smiles, we promise there will be no grimaces, sneers or Elvis snarls.

Some smiles are big and some are small. Some show no teeth, and some show them all.
Some smiles have scars from a boo boo or cut. Some babies are born with a cleft lip and palate that the doctor carefully stitches up.

Some smiles are wide that show all their braces. Some like to smirk and make silly faces.
Some smiles are crooked and sideways and such. Some simply just grin to show they are
touched.

Animals smile all different ways. They like to act silly like you and me when we play.
Some grandparents and babies smile showing just their gums. 
Some smile to themselves while chanting yoga om’s.

A jaw-dropping smile brings energy to a room. This may mean laughing might happen incredibly soon!

The lopsided smile can be warm and fuzzy. It’s ok once in a while to force a smile if you need the money.

If you see a smile you’re not familiar with, please don’t point or stare. If you ask you might meet a new friend to play with, and they can be the best kind of all! 

Remember a genuine smile is best, better than all the rest!

Whatever kind of smile you have, crooked or straight, smile as much as you can, it will simply be great. 

Take care of that one of a kind smile, and go the extra mile. Don’t forget to floss, brush, eat smart, and exercise. Healthy smiles gleam and twinkle in the eyes. 

Smiles are infectious & contagious to others. Almost everyone smiles occasionally, even little brothers. Watch out, you too might share a smile, just remember to deliver it simply with style.


Wednesday, November 27, 2019

#ThankfulThursday: Japanese Students Learn How to Choose Kind This Fall

Japanese Student Group Visiting the Dales in late October
Photo Credit: Kristine Dale 

The Dale family, along with family hosts from their school district, hosted Japanese students and their chaperones for a week in October. They had the opportunity to experience all the wonders of Fall in southern New York. From fall leaves to American students, the Dales proved to be great hosts, immersing the Japanese students in all things America. Each Japanese student received a copy of the book, "We Are All Wonders," which in the Japanese-translated version, the title is "Wonder, You Are The Sunshine." One chaperone, Kevin Blackburn, wrote about the Japanese students' experience in New York, and what a huge positive impression that Jeremy had on all the students. Keep on doing this great work, spreading the message, near and far, of kindness, because you never know when it will have a global impact.

Dales and the Two Japanese Students that Stayed With Them in Late October
Photo Credit: Kristine Dale


Here are Kevin's words translated into English about his experience visiting Horseheads, NY, where the Dale family lives.

"Encountering Kindness in the Foliage and Cultural Events of Autumn"
By Kevin Blackburn, 2019-20 Visit Chaperone
Carving Pumpkins at the Dales for Halloween!

Responding to a request from Horseheads that has spanned quite a length of time, this year we changed the time of this and future years’ visits to the autumn season. In a mere 8 days the visit group attended a middle school soccer match, navigated a cornfield maze, hiked a naturally endowed gorge, and experienced a real Hallowe'en [sic] among many other activities that gave us a full taste of Autumn. For the students, the most important thing was their encounters with their host families and with the students at the middle school they visited. I, too, had a very important encounter. It was with Jeremy, the oldest son in the Dale family. He is a completely normal young man. He has hopes and dreams, and he has trials. But Jeremy has had a facial difference since birth, and in spite of enduring more than a dozen reparative surgeries you can still see differences at first glance. He likely has been bullied or discriminated against, yet he has grown up to be a fine young man. Jeremy visits elementary schools and promotes the CHOOSEKIND movement to the students.

Dinner out with friends and the Dale Family
Most people react with surprise and a sense of distance when they encounter another person who is different. As a non-Japanese living in Japan, I have seen that reaction many times myself. What matters is the decision each person makes after that. What Jeremy is promoting is that “when you have a choice of being right or being kind, choose kindness.” The CHOOSEKIND movement spread following the American hit book and movie entitled “Wonder” (Japanese title: Wonder, You are the Sunshine”). Jeremy’s family gave each of visit group members a summary of the movement. Beginning with the two students who stayed with the Dales, all of the students learned to chose kindness not only in their interactions with Jeremy, but also with the little children they encountered during their visit to the elementary school. During our 8-day stay, Jeremy and many other residents of Horseheads chose kindness, and immediately set about welcoming us as a part of their family.

Thank you so much to the Dales and Kevin, for sharing this experience with our CCA Family! 


Tuesday, November 26, 2019

30 Stories 30 Faces 30 Years: The Wilsons




Thank you for making our 30th Anniversary celebration truly a year to remember. If that alone wasn’t enough to celebrate, we are now embarking on celebrating the 30th year of our Annual Family Retreat & Educational Symposium in June of 2020! This program is the bones behind our organization and to celebrate it properly we will be bringing the whole crew to Texas, our home state, and the place where it all began!

The Wilson Family of Boaz, Alabama, has so kindly shared with us their journey of navigating their daughter’s facial difference and how CCA’s network and programs have created a strong support community for the entire family. They were a First-Time Retreat Family in 2018, and like many of us, are hooked on the priceless moments and special friendships CCA facilitates with other craniofacial families. Having this special yearly outlet to bring our families together is a critical tenant of our community: togetherness provides strength and connections. This sense of normalcy found at Retreat cannot be replicated or imitated. It is a space created and maintained by the sincerity of our families and the work we do all year long to make it a safe and supportive environment. Read through Laura Wilson’s words on raising their beautiful daughter, Beth, and how becoming a CCA Family has positively affected them:






Hello CCA family!

We are the Wilson family from Boaz, Alabama. Our daughter, Beth, is five years old and our son, Matthew, is two years old.


The first few weeks of Beth’s life have begun to fade into a hazy memory, but somewhere in those weeks is when someone told me about CCA and I sent an email requesting more information about Pfeiffer Syndrome. Someone responded immediately, and even though it took me another few weeks to actually read it, I was thankful to know someone out there cares.

We were, unfortunately, in the percentage of parents that did not know anything was wrong with their child until birth. Not only did we not know, but the words “Cranial Syndrome” might as well have been in a foreign language, because I had no idea how to process what was happening.


Thanks to social media, I was immediately connected with fellow Pfeiffer parents through a private Facebook page. I remember reading all the posts and looking at pictures of smiling kids that were enjoying life despite all the surgeries and obstacles. As Beth grew, it became evident that she was on the more severe side of 
Pfeiffer Syndrome.


In all honesty, it has been an incredibly hard five years for me as her mom. I’ve been through extreme lows. I’m not ashamed to say it has taken therapy and medicine to bring me out of some dark times.

I encourage anyone who is struggling in silence to please see a doctor, because I promise, you can feel normal again. It takes time, but you can do it! I’m a huge advocate for mental health and I’m here if anyone needs to chat.

Now off my personal soapbox and back to Beth… Beth is classified as nonverbal, has yet to be completely weight-bearing and take her first steps. She doesn’t eat anything by mouth and the trach to help her breathe is a love/hate situation.

Each week brings a different experience that tends to make me grieve everything she is unable to do. In those moments I take the time to be sad, sometimes cry, and then look at how happy Beth is. She has an amazing quality of life despite everything that has been thrown her way. I’m proud of how hard she fights to bounce back from major surgeries.

School is her favorite place to be and I’m blown away at how smart she is. Her spunk and sassiness are out of control like any other five-year-old girl. It’s not shocking that she is 100% a “daddy’s girl,” and I wouldn’t have it any other way.

I first heard about CCA’s Retreat right before Beth turned one. I always had intentions of going, but then a surgery would be scheduled, and I would say, “maybe next year we will make it.”

Finally, in the summer of 2018, when Beth was four, and not on anyone’s surgery schedule, we made it to our first CCA Retreat in Salt Lake City!


The first word that comes to mind is “overwhelmed”— but not in a bad way! It was extremely surreal to be sitting in this hotel lobby and see family after family check-in that resembled ours. I had never met another family in Alabama that has a child similar to Beth. The closest family to us, The Shooks, have a daughter with Apert Syndrome but they are over an hour away in Georgia. Huge thanks to The Shooks, because they are the reason we found our amazing Craniofacial surgeon, Dr. Larry Sargent.

During the CCA Retreat, I recognized so many people from social media that I had never met in person until then. It was kind of funny how everyone broke apart into their own groups. I noticed that I bonded the most with parents that also had nonverbal and non-mobile children. We all found our niche within the large crowd of families and it felt comforting.

The CCA Retreat was so well planned and organized, and like most of the kids there, Beth enjoyed the last night, which was full of music and dancing.

As a parent, my favorite was the talent show. Many of the acts left me with tears streaming down my face. These kids are one-of-a-kind and I’m proud to be a part of the CCA Family. Beth will undergo one of her biggest surgeries to-date, mid face, in the summer of 2020, so we won’t make Retreat that year, but you better believe I will be enjoying all of the pictures that will be posted!

Thank you CCA, for all that you do for families like us. You give us moments to look back on that are priceless and friendships that would have never formed if not for your programs.

Feel free to follow our family adventures on the Facebook page, “Beth’s Journey.” We are always up to something new!


The Wilson Family story mirrors so many of our CCA Families’ journeys and we want to continue to support our family network in the years to come! We invite you to commemorate the largest Retreat ever and the 30th Anniversary of our most important program we are able to offer to CCA Families. Without you, this legacy of life-changing work would not be possible.

Please consider a special gift this year to support and amplify our upcoming 30th Annual Family Retreat & Educational Symposium. We want you to help us send as many families as possible to Austin, Texas in 2020! We are expecting over 170 Families. May each of you feel the warmth and love this holiday season you give to each of us at CCA. We thank you for your support of CCA now and in the future. Here is to 30+ more years of empowering and giving hope to individuals and families affected by facial differences!


Sincerely,


Christine Andler

Director of Development

Wednesday, November 20, 2019

Global Genes Rare Compassion Project Seeks Rare Disease Participants To Share Their Story




The Rare Compassion Project is a great opportunity to share your rare disease story with the future of the medical field: medical students. Global Genes will pair you with a rare disease medical student, so they may learn more about the patient experience as they train to become doctors. In learning more about your daily life, the hope is that the medical professional will be better able to address issues that may not come up at a medical appointment. Contact Global Genes today, fill out the application, and get matched with a medical student today by going to this website. 

Tuesday, November 19, 2019

#ThankfulThursday: Georgia School Raises Money In Honor of Classmate





Hopewell Middle School in Alpharetta, GA collected and will donate $733 to the Children’s Craniofacial Association. The money was raised in honor of Ian Bibler, an 8th grader at the school and CCA kid.  Further, Vicky Bibler, Ian's Mom says, "This is the third year Ian's Middle School has supported CCA during their kindness campaign during the month of September. 

We cannot thank you enough Hopewell Middle School. Your donation dollars will go to helping kids like Ian access life-saving medical care, attend our Annual Retreat and Educational Symposium in June, or distribute curriculum to students across the country to inform them about our #ChooseKind movement. Thank you for your continued generosity. It means so much to the kids of CCA. 

30 Stories 30 Faces 30 Years: Emerald Demor



"To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces."


                                                        -Emerald Demor, CCA Adult


Editor's Note: Emerald is such a light. She is truly caring and loving. Emerald listens and takes the world in carefully and kindly. I always enjoy the time I spend with her at our Annual Family Retreat and Educational Symposium. For the longest time I thought she was from Texas, but in fact she hails from Cleveland, Ohio. She works as an Information Technology Project Coordinator at Hinkley Lighting. She enjoys reading, playing board and video games. She completes the occasional home improvement project project, too. Emerald has two dogs that she loves with her entire heart. That said, family is always first in her book and loves spending time with her parents, nieces, nephews, and friends. In this essay, in her own words, she tells us what CCA has meant to her and what it means to live with a facial difference. Emerald, we are grateful you are part of our community. Thanks for being such a strong power of example for our kids and new parents.

By Emerald Demor
My name is Emerald. I have Crouzon Syndrome. I'm 24 years old. My first CCA retreat was in 2003, when I was 8 years old. Since then, I’ve gone to as many as I’ve been able. Every year [Retreat] is full of moments that change the way I view myself and the world.

To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different, but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces.

I love that I’m able to be a role model and an example of success. I want to give hope to parents and kids that having a craniofacial condition doesn’t have to be a limit. I’m constantly pushing myself to do things that challenge me. Even if I don’t succeed, I’m able to bounce back and find another way to accomplish my goals. CCA allows us all to celebrate these successes.

I also get to see examples of what my future holds. At CCA, I see people with great careers, spouses, and families. I see people following their passion in hundreds of different ways and it normalizes everything for me. It shows that even though we have craniofacial differences, that doesn’t mean we all need to follow one path.

CCA is about sharing our successes and blazing trails for each other. It’s about helping each other and sharing common experiences. Of course, we help each other through sadness and fear, but we always return to the good. CCA is a source of positivity and light that we all need.

Being born with a facial difference has forced me to be tougher. I had no choice, but to fight to survive when I was young and that's transferred over well into the rest of my life. It's shown me how strong I am. Even though it might not be easy, I can accomplish anything if I work hard enough. Having a facial difference has also made me kind. I know what it's like to experience bullying and unfair treatment. The only way I know how to overcome this is by being kind to others to try and negate the negative energy in the world. I'll do my best to always create a welcoming environment and be a friend to anyone who needs it.

Saturday, November 16, 2019

Registration for Camp Reflections Is OPEN - New Hampshire





Camp Reflections is a week-long camp for kids born with facial differences and their siblings held from August 16-22, 2020 in Southern New Hampshire.

Please contact the fine folks at this superb summer camp for more information. Whether looking for a summer camp for your kiddo or a volunteer opportunity for your teen, this may be the camp for you. 

 Enrollment and volunteer opportunities are available.  Learn more at their website: www.harborcamps.org/facial-differences Click here for our camp registration page for new families

Ask The Adaptive Athlete: Safety Helmets For Hockey and Other Sports


By Kara Jackman 

Question: My son was born with a craniofacial condition that affects the shape of his head. He is interested in playing hockey. Where can I buy a custom made sports helmet to fit my son's head?  

Answer:

Great question! Kids need helmets for so many sports including, biking, hockey, baseball, and even rock climbing if they are so inclined. I believe the sky is the limit for all kids with sports, which is why I hope this information on helmets is helpful.

I began the journey to learn more about custom made helmets at everyone's favorite search engine: Google. I also emailed a few companies, but received limited responses (read: no reply). My Google search yielded less-than-stellar information, too. Still, I found one article that gave me hope. This Gizmodo article written in 2014 describes a company called Bell helmets that created helmets using 3D camera and printing technology. The key is finding a helmet company that does custom molding to the head. It appears that Easton - Bell did make these helmets according to the Gizmodo article. This was an exciting use of modern technology. Unfortunately, when I clicked on the links to the Easton - Bell site embedded in the last paragraphs of the article, the links were dead. I emailed them and called, too, but got no response from the company. The project must not have been able to sustain itself. 

So back to the drawing board it was...This time I set the computer aside and picked up the phone. I spoke with Jim Brookshier, CPOLPO, an orthotist. He told me that he can acquire a mold of the head through 3D, laser technology, just like the folks in the Gizmodo article. Typically, Brookshier creates these scans for cranio-remolding helmets, but the same technology can also be used for safety helmets, too. For a bike helmet, the laser scans are then provided to Brookshier's technicians to build the helmet. Someone was doing this work!  


Cranio-remolding helmet Photo Credit: OrthoAmerica

Brookshier says"There are many things to take into consideration when building a helmet of this kind. 'Is there a shunt? What other face or areas of the head are prone to pressure? "What is the extent of the activity and will the helmet need to have a full-face guard? He also advises people to "check their state Department of Transportation guidelines, too." Finally, he recommends speaking with an equipment manager for your local high school or college sports teams to determine how they go about sizing a helmet for baseball, lacrosse, or hockey players. 

Beyond calling the professionals at OrthoAmerica or our friend Jim, the best advice I can give at this point is to go to your hospital's prosthetics and orthotics shop and start asking some questions. Determine whether they can build something specific to your child's head. Also, contact engineering schools or design engineers to get them interested in this need.  Thirdly, bonus points if you can get an orthotist and engineer in the same room to discuss the helmet. The need is there for our craniofacial kids, but also for bike riders, football players, race car drivers, and others that want better fit and protection. 


Thanks for the great question. If you have a sports, athletics, or activity related question, please send us a private message on the CCA Facebook page or to kjackman98 [@] gmail [.] com. 





Tuesday, November 12, 2019

#WonderWednesday: Grace Shares the "Wonder" of It All in Cypress, TX




Grace Anto started the school year off with a bang by sharing her story at Rennell Elementary School in Cypress, TX on October 28th. After reading the book "Wonder" Grace spoke about her real-life experience living with a craniofacial condition. Her teachers said the presentation, "was very engaging for our students. They felt like they could really relate to her because of all of the similarities she pointed out between herself and them." 

This year marks the second year that Grace shared her story with the fifth graders at the Rennell School. Here teacher said her impact was palpable, noticing its continued lessons reverberating to conversation the day after the assembly, "Her confidence has already inspired my 5th graders to reach out to people they don't know and get to know them, or make them feel included. My 5th graders kept mentioning her ICQ strategy today (Introduce, Compliment, and Question). Some of them even said they have already tried this strategy at school or extra-curricular activities!"



Keep impressing that important message on everyone who that will listen. Thanks