Thursday, September 20, 2018

TODAY Donate to CCA Via #NTXGivingDay

Today is #NTXGivingDay This year please donate to help us raise money during North Texas Giving Day. The largest state also has the largest heart. Hundreds of organizations located in Texas participate in this day to promote charitable giving. This year we celebrate on September 20, 2018. Set a reminder on your calendar to go to this page to donate on 9/20. 


Wednesday, September 19, 2018

Book "Wonderfully Made" by Dr. Francis Smith Now Available

The cover of Dr. Francis Smith's book "Wonderfully Made" 

Dr. Francis Smith's book, Wonderfully Made: The Dr. Francis Joel Smith, PhD Story co-written with Michele DuBroy is out and available for purchase from Amazon. 

Francis has been working on this book for a while now and is very excited to finally have the finished product available for everyone to read. He is such an inspiration to many, both in and out of the craniofacial community. Many in our CCA family have already embraced the book, purchasing it and posting images of their copies on Francis' facebook page. 

We are very proud of all that you have accomplished, Francis. Keep on making strides in medical research and 

Tuesday, September 18, 2018

A Sibling Reflects Through Poetry Oh His "Best Friend"

By Dillon Lucas

Editor's Note: Seventeen-year old Dillon Lucas wrote this deep, heartfelt poetic reflection about his brother, and best friend, Brody. Brody was born with Apert Syndrome. Dillon has watched his younger brother manage and overcome many surgeries. In this piece, he reflects on what the parental and sibling experience mean to him. He shows us the effect it has had on his family and himself through descriptive imagery and rhyme. Thank you for your thoughtful poem, Dillon. Writing is a beautiful way to honor our feelings, families, and personal experiences. You have captured them well. Keep on writing! Continue to share your spirit with the world.

My Best Friend

We have put him in the arms of a surgeon.
We have slept upright in a hospital chair.
We have listened to the beeping of machines.

We’ve been thankful.
We’ve smiled through the tears.
But with all of this going on all we can feel is fear.

We aren’t able to do anything when the time comes.
All we can do is sit there, hope and pray
That hopefully he will come out of that room one day.

The doctors, about to take him in the room.
I turn to my mom and she sheds a tear.
She leans to him and whispers “My sweet boy there is nothing to fear”

I hold back the tears after looking at my mother.
All I can do is wonder.
On what those surgeons will be doing to my little brother.

Monday, September 10, 2018

Experiencing Acceptance At Retreat

By Rasheera Dopson 

(Editor's Note: Rasheera sent us this reflection about our Annual Retreat and Educational Symposium in the days following our time at the Little America Hotel in Salt Lake City at the end of June 2018. Thank you for your thoughtful words, Rasheera.
Scottsdale, Arizona will play host for our families next year. )

I have read about my syndrome many times online, but there is nothing better than being in a room full of people who look exactly like me. The feeling is indescribable. My take away from the Annual Family Retreat and Educational Symposium this year is this one sentiment --  “some things can’t be taught but have to be experienced.”

For most of my life I have always felt a void. I felt as though I never fit in or belonged. For a long time I looked for acceptance in other places. And even though I have read about acceptance and kindness in different books I could never really understand what that truly meant until I entered a room filled with acceptance and kindness at retreat. CCA is different. They take the idea of acceptance and kindness and translate it into a actual experience. Experiencing first hand the genuine love, kindness, and acceptance at the CCA retreat has healed my heart more than any reconstructive surgery.

Sometimes people misconstrue thinking that if we just looked normal then all of our problems would go away, but that is so far from the truth.  I would proudly walk around with the same face and smile as long as I knew that there were others that loved and supported me despite my facial difference. Like all individuals with a craniofacial condition, I am not looking for perfection, but instead looking for acceptance.

My thoughts may seem a little sporadic, but that’s love sometimes; it can be a little unconventional and spontaneous. At this year's retreat I experienced genuine love. It was like God was showing me through CCA his love for my difference and disability. It's so important for spaces to be created for children and adults with facial difference or disabilities because it exposes each child to an environment that celebrates who they are. 

Sunday, September 9, 2018

Nathaniel Newman Seattle Children's Pulse Feature

The Newman family has some exciting news to share on behalf of Seattle Children's Hospital where there son Nathaniel is a patient. Dr. Richard Hooper has refined a surgical procedure called a subcranial rotation distraction that helps people born with Treacher Collins Syndrome breathe without a tracheostomy. The updated blog post about Nathaniel Newman's journey includes a scholarly article about the life-changing surgery that Nathaniel and other TCS patients have undergone. Nathaniel's father, and CCA Board member, Russel Newman writes about Nathaniel's progress after the surgery, " It really is amazing how Nathaniel is thriving since the procedure. He has grown 5 inches and gained almost 20 lbs in the last 10 months. He sleeps effortlessly 8-10 hours a night with no assistance. Energy through the roof. I think all of the kids treated by dr hopper are seeing similar results." 

You can find the journal article and a video in the middle of the Seattle Children's blog post at this link

Russel feels, "in my mind, and according to the scholarly article, changed forever how TCS Kids with complex airway issues will be treated."