Tuesday, December 28, 2021

Thank You...Because Of You, We Are Stronger!

Because of you, more kids know that they are not alone. 
Because of you, more lives have been changed. 
Because of you, more students are accepting of differences.

Thank you for a year of re-emerging hope - a year in which you helped meet the medical needs of our kids, you improved our educational outreach to students around the country, and you helped families forge life-affirming relationships with people who understand them on a deep, enduring level (yes, even on mostly virtual platforms!).

  • 190 families signed up for our Virtual Annual Family Retreat & Educational Symposium, a record breaking number in attendance and participation. 
  • We welcomed families from around the world every month on our webinars and support groups, making this the most robust year of virtual interactions in our history, serving 100s of people right in their own homes through over 30 virtual events.
  • 77 medical travel trips for CCA Families have been funded so far this year.
  • Over 15,300 students interacted with our #ChooseKind curriculum - through CCA pen pals, free books delivered to classrooms, and most importantly, hearing from our amazing Speakers Bureau members' stories.
  • Over 55 families have requested schoalrships to attend our 2022 Annual Family Retreat in Dallas, TX, and we're still accepting applications until 12/31.
These efforts combined to make this year one of the most impactful in CCA's history, despite monumental challenges.

But we must not lose the momentum. We don't ever have to serve one less family. Growth creates its own challenges and honestly, we need your support more than ever. 

Can you help us with a tax-deductible donation before the close of 2021?

Thursday, December 23, 2021

One Last Christmas Wish For CCA Kids! You Can Make It Come True

🌲The tree is trimmed and the stockings are filled,

🎅We hope your holidays are set to thrill! 

🚩There's only one last thing we ask for a reason,

🙌 Please consider a donation to CCA Kids as your final to-do this holiday season.

red background with black and white image of young girl with 'I am perfect' written on left bicep and right forearm' wearing flowered dress. Image of graphics to the right of the image.

Every single gift you give makes a direct impact on a CCA child or family. We invite you to make a gift in honor of the first person who introduced you to CCA or the craniofacial community ... this gift will be "paid forward," and will bless other families now and in the New Year. 

You can still make a tax deductible gift for 2021 through December 31 online. 
Thank you and Merry Christmas!


Tuesday, December 21, 2021

2021 Annual Appeal: Henry's 'Big Ear'

EDITOR'S NOTE: We hope your family is making the most of the holiday season. A few weeks back we sent out our annual appeal featuring Henry and his need for a "big ear." Henry tried everything he could (lots of food -- maybe too much --  and staying in peak condition), but it just didn't work. That's where some research and CCA came in to help this family with this huge request. Our financial assistance program funded flights, a hotel stay, and more for the Nobles family so Henry could receive treatment from the top medical provider in the United States for an ear. Read the whole story below, then head over to our website to make a donation and fulfill our one simple wish: to keep serving our kids. Help us help others. Your donation will help other kids like Henry achieve their dreams. Thank you! Happy Holidays and Happy New Year! You can help us make 2022 fantastic.


This is our son Henry and his canine best friend, Podkin. They were both born with a rare congenital birth defect called Microtia with Aural Atresia and Hemifacial Microsomia.  In simple words, Henry was born with a severely underdeveloped outer ear, without an ear canal, and the right side of his face is smaller than the left.  Henry has severe hearing loss in his right ear.  Microtia Atresia is a very rare congenital birth “defect” (I loathe using that word, but it is textbook) that affects one in every 20,000 births. Henry is one of only 54,000 people in the United States born with Microtia and Atresia.  


I was so excited when I stumbled on Children’s Craniofacial Association. This organization embodies everything that my family and I value.  They are an incredible support group that normalizes facial differences.


Henry’s siblings have seen the negative side and how hurtful others can be when you are born different. They can’t understand why kids stare at Henry or say mean things. They have also been teased because their brother is different.  Any time they do something new, they have to start over by confronting all of the stares and answering questions; they do it with such grace and kindness. Fortunately, now, when my children see others who were born different, they go out of their way to smile and say "hi!" Microtia has been a reminder that we are all made differently, and we all have something great to share.


Our family motto is always be kind and never give up!  


It is harder for Henry to handle the comments and stares. For the last two years, Henry has asked for a “big ear” and each time I thought, “Well, this will pass, he’s too young to understand this choice.


I have always said if Henry wants a “big ear,” then I will move mountains to get him one, but he needed to be old enough to understand his decision.  I was thinking he would be at least ten or eleven before we needed to make this decision and explore this route.  However, over the summer, it became incredibly clear that six was the age he needed to be to make this decision!  


He continued to ask for a “big ear” and I continued to say, “What?  Big ears are lame,” and “I want a little ear like yours!”  He would always roll his eyes and that would be the end of our conversation.  


Well, during quarantine, we cooked all of our meals at home, never ate out, and Henry always helped me cook.  I noticed he had been eating a ton of food – way more than normal. At first, I thought,  “Wow, he’s going through a growth spurt!”  Then one night, he ate two hotdogs, two helpings of macaroni, and three helpings of beans.


He scooted back from the table and said, “Oh my belly hurts, I’m so full!”  

I said, “Yeah, why did you keep eating?”  

His response broke my heart. 

He said, “Well, I gotta eat a lot because I gotta get bigger, bigger, bigger!  If I eat enough food, then I can grow bigger, and when I grow bigger, MY EAR WILL POP OUT LIKE A FLOWER!”  



I just about lost it.  I had to explain that is not how it works, and he just didn’t understand.  

Then, with tears in his eyes, he said, “Mommy, why did God make me special with a little ear?  I just want to be born like Kalem, Ellie, Sully and you, with TWO BIG EARS!”  And with that, I knew he was old enough to understand what it meant to get a “big ear.”


The very next day, I went on a search to find out how I could make his wish come true.  There are several doctors that can create an ear like shape, but most of them do not specialize in making ears or the other method is to cut three of his ribs in order to create an ear.  Since the ear is the most challenging and intricate body part to recreate, there are very few doctors qualified to perform an ear reconstruction, let alone create a high-quality realistic ear. This is my baby boy, and I didn’t want a makeshift ear.  I wanted a professional ear; an ear that would bring out his confidence, one that he would not regret, and one that he would be proud to show the world! 


I finally found the doctor who was perfect for Henry. Her name is Dr. Sheryl Lewin, and she is currently the only one in the world to have created a 3D-scanned Porous Polyethylene Implant Ear Reconstruction (P.I.E.R.).  Her work is truly amazing and life changing for her patients!  Children and adults come from all over the world for her innovation, advanced skills, experience, and track record. The eight-hour surgery would require us to stay in California for a minimum of two and a half weeks to ensure a successful recovery.  Due to her medical title as a Plastic Surgeon, she is out-of-network for every insurance.  She and her team work very hard to fight insurance for patients with microtia because it is not a plastic surgery; it is a surgery for medical necessity.  During Henry’s ear reconstruction, Dr. Lewin will also implant a bone anchored hearing aid.



Annie Reeves and CCA have been amazing in helping make Henry’s dream of having TWO BIG EARS a reality. Henry was so excited that he even signed his own application for the CCA Financial Assistance Program paperwork.  This support means the world to Henry and to us.  Without it, people like Henry would not be able to get their wish of TWO BIG EARS (and other lifesaving surgeries). I remember the exact moment that I read Annie’s email approving our funding.  I was shouting with so much excitement that my neighbors could hear me! 


We are so incredibly grateful and crazy thankful for her and the donors of CCA who make our children’s lives so much healthier and happier. 



With so much love,

Henry, Stacy, Josh, Kalem, Ellie and Sully Noble

Sunday, December 5, 2021

Words Matter: Affirmations Build Resiliency, and Improve Mental Health

Everyone knows we love apps! Here are a few that will help with positive words of encouragement, kindness, and motivation. Our thoughts feed our feelings, and both inform our behavior. Let's hope these free apps can help you improve your personal outlook. 

I AM App

We discovered "I Am" and it has changed everything for us. 

Here's how it works! Periodically throughout the day it throws out notifications with inspirational and motivational words for you to ponder. With "I Am," glancing down at your phone is now a part of your self-care routine.  Great sentences and phrases of encouragement abound, like "I am grateful for my best friend," or "my heart will heal." The app allows you to save our favorites. create your own, and browse by categories that align with your goals. It really is a game changer!


Another great way to remind yourself to stay positive, or begin the hard work of healing, is with Pinterest. Create a pin board to return to during times of reflection or during times of upset. We love the recipes and fashionable hair ideas, but the boards of positivity may just change your outlook. Instagram can be useful, too, if you seek out handles with motivational messages and ways to grow your self-awareness. Whether you utilize Pinterest or Instagram, these helpful reminders of positivity are helpful when we may be feeling down. They may also increase inspiration when you lack motivation. 

Decorate Your Space with Handwritten Mantras

Not a computer or phone person? That is okay! Writing quotes or words of inspiration on sticky notes, notecards, or other pieces of paper, and placing them in your workspace or on the bathroom mirror may help, too. Reading these repeatedly will slowly improve your thought patterns and emotional wellbeing. Writing them down helps your brain and body process them, ingraining them in your consciousness in a more profound way. Writing something down by hand is more likely to be remembered 24-hours to multiple days later. (https://redbooth.com/blog/handwriting-and-memory)

These handwritten messages, app notifications, and pin boards filled with inspiration will be something you encounter daily while brushing your teeth or checking your email. Over time these statements will become beliefs, leading to a new way of life.  Mantras, another word for some of these inspiration a are huge part of transcendental meditation practice, a proven meditation practice popular among many celebrities and other successful people "technique involves the use of a silently-used sound called a mantra, and is practiced for 15–20 minutes twice per day." (Wikipedia) Your mantra is a statement that will bring you "a state of relaxed awarenessstress relief, and access to higher states of consciousness." (Wikipedia)