Friday, July 21, 2017
We have another exciting Charity Buzz auction item available to benefit CCA. Win 2 tickets to see Cher in concert. The tickets include a backstage meet and greet and great seats at the show in Las Vegas, Nevada. If you live, or a willing to travel to Las Vegas on November 11th at the Park Theater at the Monte Carlo Casino for this one-of-a-kind experience, then bid today
Act now, the auction ends on Thursday, July 27th.
Thursday, July 20, 2017
|Sandy and Drew Davis at Dulles Airport in Washington, D.C. |
(Photo Credit: Drew Davis)
By Sandra Davis
I recently took a trip to Reston, Virginia with my son Drew Davis. At least that's where I thought we were going. But as fate would have it, we landed in what I can only explain it to be as Heaven! Well if we weren't in Heaven we were only one floor down! Upon arrival I met some very special people! And we were told it was a safe zone! Leave your judgement at the door! Drew and I had arrived at the 2017 annual Children's Craniofacial Retreat! Being that it was our very first year we have ever attended, I knew immediately that we have missed out on years of amazing times and relationships! It actually looked like a family reunion! Hugs all around and huge smiles!
What I found most interesting was all of the special little people and big people with facial differences. Yes, I said differences, not defects! We were there to celebrate, embrace and love on those differences! Because basically, don't we all look different?!!! One really amazing person, among many, that we met was named David Roche! David was so full of life, with a great sense of humor and a gift of gab! He shared his story of being born with a birth mark that eventually lead to having had to have his lips removed. But don't feel sorry for him! Through an incredible loving family, David learned how to love himself! He's cooler than most people I know and snagged a gorgeous woman as his wife! The most important lesson I learned from David was that he feels blessed to have been born this way because it made him look inward to find his true beauty! And he is beautiful! That beauty goes well below the surface to his soul and shows best through his eyes and his heart! One minute into his speech, I didn't really see anything different but one of God's creations made into His own image! I could have sat and listened to David all day! He was truly inspirational! It's such a shame that our society goes by standards set by a shallow group of people, like in magazines, that dictate to readers what beauty is!
I experienced true beauty this past weekend in the hearts and souls of all I met! You felt free from ridicule and loved for who you are! Parents were happy to have someone else there that could understand their journey, children played together uninhibited and without the stares. Young adults with facial differences laughed and discussed their ways of navigating through life, the challenges of school, work, and relationships. Siblings were there also, sharing their experiences of growing up in a family with a journey most different than their peers; a tough journey sometimes, yet truly rewarding!
I only wish I had known about the kind of support that the CCA group provides throughout the years of raising Drew. We have a new family now! A safe place! A place where judgement has no stand! A world of new friends!
My heart is so full and I want to help others understand that facial differences are just that....differences! It doesn't change who that person is on the inside. It doesn't change the talent one has or the desires of their heart. We are the same with just different packaging! I can only say that it was an amazing trip to see that even though my new friends may have to overcome obstacles that many of us will never know, they are still incredibly able to do whatever God has blessed them to do! I'm so beyond grateful to call this group family now and cannot wait until next year where we will come together for another reunion!
Wednesday, July 19, 2017
Time to load up on 'Wonder' gear before the movie debuts. Head over to our webstore today to get everything from T-Shirts, bookmarks, pins to the book itself, to celebrate and share your love for all things Auggie Pullman.
Pay special attention to our newest item is the ChooseKind vinyls. You can peel and stick them on anything including, car windows, water bottles, phone cases, and laptops. You can turn anything you own into a work of art and spread the message of kindness to others.
Monday, July 17, 2017
By Brittany Stevens
My name is Brittany Stevens, and I’ll be 27 in August. I was born with Nager Syndrome, a rare craniofacial anomaly which features missing bones throughout the body, microcephaly, a short chin/jawbone, bilateral hearing loss, and about 25% of us have Intellectual Disabilities. I’ve had 37 operations, including a C1-C2 Spinal Fusion, bone added to both feet, 14 sets of ear tubes and had my chin lengthened.
The chin surgery truly changed my life! Growing up with a short chin, weak palate and thumbs that couldn’t bend was challenging. My speech was limited and I have intellectual disabilities. During my early years, I was taught some basic sign language. My family, especially my younger brother Quinn Stevens, had to pay close attention to me in order to learn what I needed or wanted. My brother probably understood me better than my mother...and she really knows me! Ultimately, having chin and gland surgeries allowed me to stop excessive drooling, gave me the ability to eventually work, but more than that, I gained a voice, and haven’t stop talking since!
Living with Nager Syndrome has so many challenges, including seizures, and so little was known about this Syndrome in the early 1990s. Because of the multitude of complex medical issues in my early years, I received more attention than my brother. He was scared at times, but he eventually understood that my rare syndrome was just a part of my life, our lives.
Education is critical for special families. I attended Early Intervention at Easter Seals, and was blessed to attend Philadelphia Public Schools, via the Life Skills Program. The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, I blossomed into the unique woman that I am today. I presently work at the PATH Workshop (People Acting To Help), participate in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and I go away to adult camp one to two weeks every summer where I continue to learn work and life skills (Carousel Connections Camp).
Foundation for Nager & Miller Syndromes families at the annual and biannual retreats! The retreats have allowed my family and I to see the country and make lifelong friendships. Each year each retreat is my favorite. I had the opportunity to meet Cher, and many other wonderful people over the years. Even better, my mother and doctors have learned how to keep me healthy. To our new CCA families, “Welcome,” and to all the families I know all too well, I look forward to tickling and hugging you soon!
Written by Harlena Morton
Mother/Legal Guardian of