We are really excited to share with you the publisher's press release about the book "Wonderfully Made, a book written by Dr. Francis Smith and Michele DuBroy. Enjoy learning more about this book about the life story of Dr. Francis Smith.
Friday, December 14, 2018
Nilah, an 11 year old from New York City did her science fair project on Treacher Collins syndrome after reading and watching the movie "Wonder." She was so in love with the character of Auggie Pullman that she wanted to learn more about his facial difference that she made it the focus of her project. Her father, Luis Pinheiro, encouraged her to not only read about it, but talk to people affected with this facial difference. He said, "I suggested, instead, that she contacted actual people (kids or adults alike) who have this syndrome and who might be willing to answer a few questions. The questions should take no more than 5 min to answer and are meant to educate her classmates (and their parents) so we can better understand and communicate with those who have TC syndrome."
Luis and Nilah contacted CCA and executive director, Erica Mossholder, was kind enough to post to connect her with some video, CCA syndrome booklet, and people to talk to, like Jono Lancaster. Below you can see images of her at the science fair.
Looks like it was a success. Thank you Nilah for raising awareness about TCS in NYC!
Tuesday, December 4, 2018
Marco and Angie Garcia spoke on Sept 24th at Neil Armstrong Academy in West Valley City, UT in front of 120 sixth graders. The students recently read the book "Wonder" and welcomed two, real-life Auggie Pullman's into their classroom.
One of the West Valley City school teacher's said "Angie and Marco did a wonderful job of making students feel comfortable in asking honest questions. They presented themselves in a way that students were able to connect to them. They were very down to earth and enjoyable to listen to.”
Angelica reflected on her Facebook page about the September speaking engagement by saying, "Our first LIVE Wonder session with 4, 6th grade classes (120 students!) since RJ was born & etc was heavenly perfect. We were continuously honest with the teachers (in advance) & kids & shared about RJ; the timing (how it’s just been almost 4 months) & everything & they still wanted us to come as much as we wanted to. It was raw, it was (continuously) so honest, so open & truly beautiful. They genuinely kept saying it was perfect & met all their goals on teaching the value of true kindness as well as getting to know people with facial differences as people. At the end, I added a new part to our teaching; the mom perspective: how I would have wanted our son to be the nice kid & have true friends as well as be the truest self he can be at all times. Bottom line: Being genuinely kind & true to yourself & others is one of the best & so many ways to be a wonderful you. While we were doing the photo opt, one teacher was inspired to have the kids do a heart gesture with their hands shot. I have a feeling that was for RJ ❤️
Always teaching the world & heavens as a family to be kind & real" 💛
Thank you Angie and Marco for sharing your story with these kids.
Sunday, December 2, 2018
Ian Bibler had the opportunity to share his story in front of his church family. After his moving testimonial about his past struggles and upcoming jaw surgery, the crowd gave him a rousing, round of applause. Many thanks to Bibler's church family for providing him the platform to share more about Treacher Collins syndrome with them. Ian, everyone at CCA hopes that you are doing well during your post-surgical recovery.
Sunday, November 25, 2018
Editor's Note: Thank you, Hannah for sharing your inspirational
writing with us. Keep up the great work!
By Hannah Brown
Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.
I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.
In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.
A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.
Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.
Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything.