Saturday, November 30, 2019
Wednesday, November 27, 2019
|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|
Thank you so much to the Dales and Kevin, for sharing this experience with our CCA Family!
Tuesday, November 26, 2019
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!
Director of Development
Wednesday, November 20, 2019
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
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.
"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
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
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?
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
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
Wednesday, November 6, 2019
Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, has worked for 30 years toward the vision of a world where all people are accepted for who they are, not how they look.
Children’s Craniofacial Association hosts Jono Lancaster, UK motivational speaker and international activist, as we celebrate the 10th Annual Gingertown build event on Tuesday, December 10th at 5:00PM at NorthPark Center, downstairs by Nordstrom.
Lancaster was born with Treacher Collins syndrome, a facial difference affecting the structure of jaw bones, ears, and head. He was born in the United Kingdom, but shortly after his birth parents relinquished their parental rights and he was placed in foster care. Fortunately, he was adopted by a loving mother who offered him a stable home. Jono experienced bullying and teasing growing up, today he still contends with cyberbullies on the internet. His life story was the subject of a series of documentaries that aired on the BBC. For over a decade, he’s traveled the world giving hope to kids and families affected by Treacher Collins syndrome and various disabilities, and delivers relevant inspirational speeches focused on learning to love yourself - no matter what makes you “different.”
He will be speaking at the Gingertown build, where we hope you will join us to watch local architects and builders erect a gingerbread town and Jono speaks to “build up” our community with tolerance, acceptance, and kindness.
Later that week, NorthPark has gifted CCA families the chance to see the incredible NorthPark trains and visit Santa with a generous donation of tickets for the CCA Kids. Tickets are available thanks in part to Lilly Pulitizer who distributes them to our families and hosts an annual shopping day to raise funds for our services. Saturday, December 14th at Lilly Pulitzer, 10% of the day’s sales from 2pm-5pm will be donated will be donated to CCA. Anyone can come by and shop for a great cause!
CCA offers programs and services including Patient Financial Assistance for Medical Travel, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in schools across the country. Learn more about at http://www.ccakids.org.