Wednesday, September 27, 2017

#ThankfulThursday: Many Thanks To Our Doctors

We are thankful today, on this #ThankfulThursday, for our doctors. This post has two videos, one from Children's Hospital Colorado  and the other from the London Craniofacial Unit in the United Kingdom. 

Dr. Gregory Allen clearly states and shows in this video his passion for the work he does for kids with craniofacial conditions, especially cleft lip and palate. Many thanks to the American Cleft Palate-Craniofacial Association for sharing this on their Twitter page. 

Below is the second video from London describing Apert's Syndrome and the impact it has on the child. 

#WonderWednesday: Curriculum and School Visits Available


Let Children's Craniofacial Association help you bring R.J. Palacio's "Wonder" into your school's  curriculum this year by reading the book, using CCA's cool program packs, and inquiring about having a "Real Life Auggie" visit your school. 

Would your child like to be one of our CCA WonderKids? We are contacted by more and more Elementary and Middle schools who want to be connected with a "Real-Life Auggie," who is the main character from the book, "Wonder." This is one of the elements of CCA's Choose Kind program. 

Parents, let your schools know all that we have to offer to support them in teaching the message of kindness from this significant book to our community. We have everything from bookmarks to the ChooseKind pledge that your students can take at the beginning of the school year. 

Cards and words of encouragement written by a class after they read "Wonder."

The student response in the schools that have run our programs and curriculum packs has been impressive. Other project ideas that CCA offers students are a penpal program, Skype sessions, and visits by the aforementioned "Real Life Auggies", our CCA Kindness ambassadors. Your students could be writing letters, sending cards to the Wonder Kid we assign you. Many receive standing ovations at the assemblies  they are part of when they visit the schools. 

If your child would like to volunteer to visit a school or if you are interested in CCA's curriculum packs, contact Annie Reeves, [email protected]. Your child must be between the ages of 9-18 to participate. 

All of these cool ideas will help you teach this important book to your children. Hopefully, it will change the way they see and treat others this school year and in the ones to come!

Monday, September 25, 2017

More Excerpts From the Our Altered Life Blog By Charlene Beswick

Harry and his brother Oliver Beswick

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. 

By Charlene Beswick

Why I decided to share my journey

I didn’t cope particularly well with the news that Harry had been born with Goldenhar Syndrome. I wasn’t expecting it and I had no idea whether I was up to the job of being a special needs mother. You would never have known this to look at me though. Since I was a child I have been the joker, the entertainer and the one who has tried to make light of a situation and see the humour. So, I painted a smile on my face and tried to live up to the idea that everyone else had of me as a strong, positive, woman. 

It wasn’t until 6 years later by which time my marriage had disintegrated, our family home was being sold and I was feeling the effects of sleep deprivation with an autistic son who thinks that sleep is overrated that everything caught up with me. My mum took me to the doctors and I was prescribed anti-depressants to save me from myself. 

Looking back to the start of the journey, I wish I could have spoken with someone who didn’t feel the need to pretend that everything would be fine when they didn’t know that for sure. I wanted someone to tell me the cold hard facts of a life less ordinary. I needed to have a pity party and grieve for the life I had lost as well as planning for the new future ahead. 

My book is that ‘conversation.' It’s the book I would have wanted to read at the beginning. My truth about how I struggled and learned to forgive myself for something that was never my fault. An account of how the baby I felt I had let down made me the best mum I could ever be. A transformation from weary to warrior mother and hopefully, some hope for other parents who have ever felt as lost as I did at the start and need some reassurance that the life you never expected can still be an incredible one. 

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,

Friday, September 22, 2017

#Greatest Hits: An Interview with Artist, Scott Clarke

To celebrate Craniofacial Awareness Month we will be featuring some of the posts that received the greatest number of hits over the last year.  In this post, we profiled artist and philanthropist, Scott Clarke. His creative designs and cartoons have helped CCA in big ways. A portion of the sales of his book, Cher-toons, will be donated to CCA. Please purchase a copy here

CCA: Who are your favorite artists? 

SC: MY FAVORITE ARTISTS? Hmmmmmm….I love sooooooo many, I always think everyone else’s work is better than mine and get discouraged! LOL, I don’t think I have a favorite artist … but many styles are inspiring to me!

CCA: What’s your favorite illustration you’re done?  
SC: It wasn’t my favorite because I liked the art so much but the one that made it to Cher’s Birthday Cake will always be my shining moment.

CCA: What inspires you?
SC: What inspires me is people who have nothing and still find the courage to get up every day and smile, Children with mental or physical challenges that move through life without despair and overcome. Elderly people with wisdom, wit and heart to share even after they’ve been brushed aside. I get inspired by those I want to help, even if they don’t need it.

CCA: What other hobbies do you have?
SC: My other hobbies are boring, I enjoy my gym time, I like yard work, I love music and love to sing (wish I could do it more often). I sang with a band years ago. My art keeps me very busy…not much time for other hobbies! LOL.

CCA:What does kindness mean to you?
SC: Kindness to me is making someone simply smile and expecting nothing in return.

CCA: What’s your motto?
SC: My motto, I have a few, but my favorite is “things can’t fall in to place if they don’t fall apart first”

CCA: Why did you agree to help CCA?
SC: I had never heard off CCA until I saw the connection Cher had with the organization. Once I learned of it I began to look at it more in depth. Having a young daughter myself my heart was hooked on the organization. My daughter had a cyst in her face as a child, nothing too severe, but I remember the difficult time she had and what she went thru before it was removed. Once again it wasn’t anything so severe that it was life altering but it brought me even closer to CCA and help me see just a small bit of what the parents and children must go through. I wanted to help, and the best way for me to help is to use my gifts (my art) to help with awareness and acceptance. Since I’ve begun sharing my talents with CCA I’ve grown to love these kids I’ve never met! 

CCA: Name 5 things you'd like to do before you die? 
SC: Hmmmm….I’d love to see a Broadway Show (no I’ve never seen one), I’d love to sing again, I’d love to get in to inspirational speaking (I survived when I don’t think I was supposed to, and I’d love to help others see they can too), I want an art degree (but I don’t feel like doing the required courses part), I use to say I WANT TO MEET CHER BEFORE I DIE, but NOW I think to myself she should wanna meet me! HAHA!

Thanks, Scott, for donating a portion of your sales from these awesome Cher-Toons books to CCA. Get your copy here.

Wednesday, September 20, 2017

#ThankfulThursday: Sell 10 Car Raffle Tickets, Win A Chance to Have Your CCA Retreat Costs Covered

You have probably heard about our Car Raffle by now! Well, we want to extend a special opportunity for our CCA Families ... if you help us out and sell 10 (or more) Raffle tickets*, you will be entered in a drawing for a Room Scholarship at the CCA Retreat 2018! 
That's right - one lucky family who sells 10 (or more) tickets will win a room scholarship, also drawn in October 2017!
You can see a video of the 2017 Retreat here:

It's very easy - just share this email and tell your friends, neighbors and family. Have them order online (*and put your family name in the "Tracking Code" box) or call the office and mention your family name. If you'd like to walk around your neighborhood selling tickets, let us know and we can send you order forms. 
I'm asking you to share this opportunity with your friends! We're selling only 500 more tickets (1,000 total) and the winner will get to pick a Jeep Wrangler, Dodge Ram, or Chrysler Pacifica, valued at up to $50,000, at a dealership nearby and drive off in a brand new vehicle!
You can buy a single ticket for $100 or 3 tickets for $250.Please tell everyone you know. Forward this message to your contacts and share it on social media. We need to sell out ASAP!
Good luck!

#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!