Wednesday, September 20, 2017

#WonderWednesday: Paving The Way For Kinder Schools in Louisiana

Candice Robin and her daughter, Anna Lise Photo Credit: Facebook

Schools across the country are receiving Wonder books from Children's Craniofacial Association. Candice Robin, of St. Landry Parish, Louisiana, began a fundraising campaign for local school districts during the summer. Her T-shirt campaign helped get 200 copies of Wonder sent to the school where her 18-month-old daughter, Anna Lise, nay attend school someday. Her daughter was born with Treacher Collins. 

Robin was interviewed on the local TV news to promote the efforts of her group "Wonder 4 Schools Louisiana." You can see her interview in this previous blog. 

In a recent news article that appeared in the Daily World (part of USA Today), Robin says of having a child born with a facial difference, “Hopefully having students read the book will make them aware of the matter," Robin said. "The word which comes to mind is ‘kindness’ when you finish reading it and how that plays a big part in resolving issues.”

You can help contribute to Candice Robin's crusade to educate the students of Louisiana through R.J. Palacio's novel "Wonder" by visiting her fundraising page and buying a "Wonder 4 Schools Louisiana" T-Shirt. 

If you are interested in bringing the book "Wonder" to your local school, go to our website. We also have curriculum, merchandise, and downloads that could help in bringing Palacio's story to life. 

Tuesday, September 19, 2017

Photos from #CAM2017 Dallas Picnic

This year's Dallas Picnic at Sandy Lake Amusement Park to celebrate Craniofacial Acceptance Month was a smashing success. Many family came out for a day filled with friends, carousel rides, and kindness. Here are a few snapshots from the day. Look at all those smiles!

Many thanks to all the families in Dallas for coming out and making this day special for our kids.

#ThankfulTuesday: Kimberly Majus to Play in the 10th Annual Links of Love for CCA on Sept. 29th

It is a very special #ThankfulTuesday!

Kimberly Majus is playing in our Links of Love Golf Tournament with her friend, James.
We are excited that they will be there to support CCA on the greens of Firewheel Golf Park on September 29. We hope you will join us, too.  

Here is a short piece that Kimberly wrote to share with us on the CCA Kids Blog. Thank you, Kimberly for your words and your support!  

My name is Kimberly Majus and I was diagnosed at 18 months with Cranial Metaphyseal Dysplasia. I graduated high school and was 1st runner up at my school's beauty pageant. I graduated from college with high honors, several times on the dean's list and was a member of the Phi Thea Kappa. I was married to my husband for 21 years and now a widow. Currently, I live with my best friend, James who is deaf. We bought a house together and we both work for The Home Depot. I am currently "Cashier of the Month" for the month of August, . We have two beautiful dachshunds and they are the loves of our lives. 

Don't let anyone tell you that you cannot do anything. I learned to live with my disease. It doesn't have control over me. You can succeed in anything if you set your mind and heart to do it, no matter what. Philippians 4:13"I can do all things through Christ who strengthens me."

Monday, September 18, 2017

Ask The Doctor: Bone & Gingival Graft with a Periodontist

Earl Gage, MD
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

Question: Our child is being referred to a Periodontist for a second bone graft and gingival graft for the upper front teeth. We have been told this is a more delicate surgery than the initial bone graft that the plastic surgeon performed 2 years ago. What kind of questions should we ask about the surgery and determining which doctor to use?

Answer: Thanks for your question. I presume from your question that your child had a cleft lip and palate and that the graft 2 years ago was to close the cleft in the alveolus or gum line. There are certainly times when re-grafting is necessary. Sometimes the first graft fails. Sometimes the graft “takes” but there is insufficient bone to allow a subsequent desired procedure, such as placement of a permanent dental implant. More often than not, the re-grafting procedure is essentially the same as the first surgery. With any bone graft surgery, it is critical that there be healthy soft tissue to cover and protect the graft as it integrates. Ideally, we want a water-tight seal around the graft. If the incision pulls apart or if there is a persistent open connection from the nose or the mouth into the space where the graft was placed, the graft is likely to become infected and fail.

Since children with craniofacial and cleft problems are more complex to manage than children without these types of diagnoses, I would first recommend that you ask your periodontist if he or she has experience in doing these types of procedures in kids with similar diagnoses. Experience and judgment matter. Secondly, I would be a little nervous about bone grafting and gingival grafting being done at the same time if the gingival grafting procedure will result in other incisions and soft tissue disruption near the site of bone grafting. Again, you want healthy soft tissue and a water-tight seal. Anything that may compromise this type of closure needs to be carefully discussed. I would spend some time talking to your periodontist about what’s involved with gingival grafting and whether it may put the bone graft at risk. Finally, once you meet with the periodontist, I would recommend you discuss the plan with your craniofacial surgeon to make sure they feel it is safe and makes sense.

Best of luck!

#CAM2017 Greatest Hits: VIDEO, My Funny Face by Shea Freeman

To celebrate Craniofacial Awareness Month we will be featuring some of the posts that received the greatest number of hits over the last year.  This one is from contributor and filmmaker, Shea Freeman. 

By Shea Freeman
My name is Shea Freeman and I was born with Crouzon Syndrome. I've attended a couple of CCA events. Most recently, I was a speaker at an event back in 2013 in Orlando. I made a documentary about my life at the request of my doctor, Mutaz Habal. Since then, I have gone on to move to Los Angeles and currently I am developing a TV pilot that is loosely based on my life with Crouzon syndrome. 

I also created a webseries called, Mr. Funny Face, which chronicles some of my experiences living with Crouzon Syndrome. It's meant to be a funny portrayal of how I handle these situations, as I pride myself on having a good sense of humor and being able to take a joke. Here is an episode about what happens when children comment, "you're weird looking" to me. I'm sure everyone can relate to what plays out in this short episode. Enjoy!

Sunday, September 17, 2017

Survey Participants Wanted For NICU Experience Study

A graduate student at California State University San Marcos is conducting a research study about families with children born with cleft lip, palate, or other craniofacial conditions that spent time in the Neonatal Intensive Care Unit. (NICU). The student would like to ask you some questions was part of a 20-30 minute survey to learn more about your families experience in the NICU. Participation is completely voluntary and the answers will be anonymous. If you are interested in helping this researcher, please contact her at austi025 [at] cougars [dot] csusm [dot] edu, or her research supervisor, Dr. Scheer-Cohen, at ascheer [at] csusm [dot] edu

Let's Celebrate Our Partnership with The Mighty

We would like to thank The Mighty for our enduring partnership and ability to share their stories with our community. Many of them have a great impact on our members. Their contributors are honest, kind, courageous, and filled with such determination, we  cannot help but be in awe of all that the community has to offer.

Thank you to The Mighty for putting all those words of encouragement in one place. Check them out at The 

Saturday, September 16, 2017

Family Spotlight: Rasheera Dopson

Hi there! My name is Rasheera, I am 26 years old and I have Goldenhar Syndrome. I currently live in Atlanta, Georgia. I grew up in the suburbs outside San Francisco with my Mom, Michelle, and two older siblings Rachelle and Rashaun. I am the baby of the family. 

During the past year, I have had to deal with unforeseen medical problems. What started out as a toothache ended up being a six month medical journey. I found myself at the end of this journey laying on the operation table getting five of my teeth removed.  It was a pretty intense experience. Nevertheless, over the course of this medical scare I learned two very important life lessons. 

First, I learned that no matter what, no matter how sick you are family is EVERYTHING! It was hard to ask for help because I am an independent, single person. When I got sick I had to rely on my family to help. The pain from my mouth was so crippling I was forced to take time off from work and seek medical treatment. Ultimately, I had to leave behind my job, my friends, and my daily routine to move back to California to live with my mom. In California, I was able to get the care I needed for my teeth and jaw. This was not an easy process, but it was most definitely necessary. I knew if I wanted to get better that I would have to sacrifice my own independence for better medical care.

My family stepped in during one of the most vulnerable moments of my life. I would expect nothing less than them. The sacrifices they made on my behalf showed just how important having a support system is. I really appreciate everything they did for me. My mom and sister trekked back and forth from doctors' offices and appointments when I was too weak to drive. I was very grateful.

 Although I dearly missed my close friends in Georgia, I relished the time spent at home with family. In the midst of my medical crisis, our family grew closer. Often, we took my visits home for granted.  This year we were all grateful to be around one another even if it was not under the best circumstances. I truly love my family. I am so grateful for their continued support.

The second lesson I learned was on inner strength. The time that I spent at home was very uncertain. I was not quite sure on what to expect from day to day. Up until this year, I was relatively healthy.  My last surgery was nine years ago. After I started college, I did my best to live a normal life. I tried to put sickness and Goldenhar syndrome behind me. Nevertheless, I learned that that was not possible because my syndrome would always be a part of my life.  

When I found out my teeth were falling apart and my jaw bone had weakened, I felt like a failure.  I somehow blamed the fracturing of my teeth on myself rather than my condition. However, I quickly came to realize that there were some parts of my syndrome that I would not be able to control. The only thing I could do was accepted what was happening to my body and do my best to move on. Through acceptance I found my inner strength. I embraced my syndrome in new way: no longer would I be ashamed of being born with Goldenhar Syndrome. Instead, my facial difference was something to accept and proudly show the world.

Even though I am better now and no longer in pain or dealing with an infection, this process was not easy, but it was worth it because I learned these two vital life lessons. There is a big difference between living with a craniofacial condition as a child versus as an adult. There is far more to process and handle, like uncertainty, insurance, booking medical appointments, and other stuff that my mom used to handle. There is also so much more to learn as an adult because so much more of the world is revealed to us. I would not change anything about this year.  I am stronger now, healthier, display more compassion, and have even greater self awareness and self-assurance of my place in the craniofacial community.  I know that in everything I go through in my personal and medical life that my family will always be by my side.  Finally, I know I can always rely on my inner strength, self acceptance, and the strength of my faith in God, to make it through.

Editor's Note: Follow Rasheera's journey on her website, Beauty With A Twist, where she writes about Goldenhar Syndrome, living a spiritual life, and more! 

#Greatest Hits: The Richmond Family

To celebrate Craniofacial Awareness Month we will be featuring some of the posts that received the greatest number of hits over the last year. Ms. Richmond shares her poignant and well-writtn story of living with Treacher Collins Syndrome. We can all learn so much from her reflections on how to build the best life. 

Life has been quite a journey full of ups, downs, and crazy turns along the way.  It has been filled with trials and tribulations, love and laughter, smiles and tears but I wouldn’t have wanted it any other way.  I am a wife, sister, daughter, mother, friend, teacher, student, and I have Treacher Collins Syndrome.  

CCA has been a part of my life since I was 3 years old. My very first activity was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by activities in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the wellbeing of both parents and children. The first CCA Retreat was born from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood.  My family participated in that very first retreat in Orlando, Florida.  Char and Jill along with others have been an important part of my life ever since.  We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones.  I met Emily Paulson, my first real friend with TCS, when I was 6 and Emily was about 18 months old.  In Fort Lauderdale, I was finally reunited with Emily in person for the first time since I thought I could carry her around like my very own baby doll who looked like me! While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered.

I was born on May 20, 1986 (a little fun fact, Cher and I share the same birthday!).  At four months old, I went into full respiratory and cardiac arrest at home. Doctors worked tirelessly for hours to resuscitate me.  I was placed on a ventilator and doctors informed my family that they were not sure I would survive through the night and feared severe neurological damage in case of survival. Several days later I made my first trip to the OR to be trached.  I know this worrisome beginning to life may sound all too familiar to those of you reading this.  Since that time, I have undergone over 50 surgical procedures.  Having TCS has impacted my life tremendously; however, even at a very young age I learned to use it as a positive influence.  I continue to strive to grow and become an outstanding example of how someone can excel despite what would appear to be overwhelming odds.

While growing up I remained active despite constant interruptions from school due to medical complications and numerous surgical procedures. I was a curious, bright, and voracious learner. I received special education services to help support me over the years.  

I danced, performed in community theatre, went to homecoming dances and proms, participated in school activities and went on to graduate in the top five percent of my high school class. Upon graduating high school, I became the recipient of a Ben Carson scholarship and was named Baltimore County’s Young Woman of the Year.  I was nominated by my surgeon, Craig Dufresne, and received the American Society of Plastic Surgeons’ Johnson and Johnson Patients of Courage Award.  A donation was made to CCA in honor of that award.  I went to college and obtained my master’s degree in Teacher as a Leader in Autism Spectrum Disorders.

Bulletin boards decorated, individualized picture schedules, lesson plans prepared … “Am I ready for this? Will my students like me? Will they ask questions about my appearance?” Those thoughts raced through my mind the first day I became a teacher. Teaching is challenging, that is just a fact. However, no challenge has paled in comparison to the unconditional love I received from my students.  We all have moments of self-doubt and fear of the unknown but I am so glad it did not hold me back from fulfilling my dreams of becoming a teacher.  I have been a special education teacher for eight years and the children I have taught will always have a special place in my heart.  

Having been a child with special needs, seeing CCA children overcome obstacles, and teaching children with disabilities has inspired me to be a leader in the field so that I can help provide the best education for all children.  In July, I took a year of leave from teaching because I was accepted to the Center for Innovation and Leadership in Special Education fellowship at Kennedy Krieger Institute in Baltimore. I am receiving intensive mentor training in the neuroscience of learning and the learner, principles of behavior change, knowledge acquisition of evidence based practice, and education law. I am also pursuing an advance degree in instructional leadership and professional development.

While I am passionate about my work, my family is truly the most important part of my life.  I have been married to my middle school sweetheart for 6 years.  We’ve shared quite an incredible journey together but nothing tops the proposal at the Grand Canyon, exchanging our vows in front of those we love most, and experiencing the birth of our two miracle babies.  My favorite thing in the world is relaxing at home watching Zootopia for the hundredth time while holding Hudson in my lap, playing cars with Lyle, and seeing Kevin smiling back at me as he gives our dog Copper a belly rub.

I believe that my life experiences can be directly attributed to embracing my differences many years ago. At a young age, I made the decision to turn my disability into a teaching tool. I grew up within a family who was dedicated to empowering and giving hope to people with facial differences and their families through sharing our experiences for the purpose of reciprocal support.

“She made not live through the night,” they said. Here I am.
“She can’t swim with a trach,” they said. Did it...all...the...time (though for safety reasons I might not recommend it for everyone).
“She will struggle to learn to read,” they said. I struggled but it “clicked” in second grade and now I am pursuing a post-graduate education.
“You’ll find love one day,” they said. I did and it appeared when I least expected it.

Be true to yourself.  Educate others and spread kindness. Most importantly, bring your hopes and dreams to fruition. 

As a teacher, mother, an adult with a disability, and lover of all children’s books …

Listen to the musn'ts child,
Listen to the don’ts
Listen to the shouldn’ts
The impossible, the won’ts
Listen to the never haves
Then listen close to me –
Anything can happen, child,
Anything can be …

The famous words of Shel Silverstein.

Wednesday, September 13, 2017

Excerpts From Our Altered Life

By Charlene Beswick

Harry, Oliver, and their Mom, Charlene

Charlene Beswick's life changed forever the day she gave birth to two twin boys, one with a facial difference called Goldenhar Syndrome. Here is a passage from her book Our Altered Life. 

“Oh, I don’t mind what sex it is as long as it’s healthy.”

I have heard it a thousand times. I even said it myself when I was pregnant. We knew that I was cooking two little people, but not whether we were having boys or girls. In a world where everything is instant these days from your coffee to your car insurance, we wanted to wait until the babies arrived until we found out their gender. Patience is not one of my virtues so this was tough for me but I wanted to experience the elation of hearing “It’s a boy!” or “It’s a girl!” and keep everyone waiting for the news just as I had done 16 years earlier waiting to find out if I had a baby brother or sister! 

The anticipation was so exciting.

I never, not for a moment, expected anything other than two perfectly healthy babies. I had looked after myself brilliantly and not given in to too many weird and wonderful cravings. I knew that my babies would be the best babies in the world and I loved them even before they arrived.

Of course, everything changed when they did arrive. Eight weeks early, weighing just 3lbs 9oz (1.6 kg) each. They were tiny. And Harry had half a face. No eye, eye socket, ear, nostril, and a short jaw on the left-hand side. A diagnosis of Goldenhar Syndrome plunged me into a world of language and options I couldn’t comprehend. I had said I didn’t mind whether they were boys or girls as long as they were healthy. Now I was being faced with a reality I had never imagined. A life I had not planned for. A future I couldn’t predict. A world I didn’t want to be a part of.

There isn’t a word to describe how I felt. Maybe the analogy of being stuck at the bottom of a long well explains it better. Feeling like the only person in the world with your thoughts echoing and bouncing off walls you have no way of climbing. Waiting for someone to come and rescue you from this moment. Feeling helpless, desperate, and beyond sad.

Of course, it didn’t last and Our Altered Life chronicles the journey with my boys who I naively believed wouldn’t be the ‘best babies in the world’ when we heard the news, only to discover in fact that they would become the best boys in the universe (at least, in my universe!) It’s my honest account of how a life I would have never chosen became a life I would never change.

The book Our Altered Life will be available through Amazon on September 29, 2017. 
For now, read where it all began at Charlene Beswick's blog,