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)  

Monday, November 29, 2021

Happy #GivingTuesday Everyone!

 It's November and that means, three things turkey, gratitude, and #GivingTuesday

And while the turkey has been eaten, and the gratitude always abounds...one thing remains to check off my list... tomorrow is #GivingTuesday

Each year after Thanksgiving, we begin Christmas shopping on Black Friday and continue on Cyber Monday. After those two days, we have #GivingTuesday, a day to support our favorite nonprofits. A day where YOU can help US.

You can contribute in a number of ways. Share an #unselfie telling us why you love CCA so much. Add the hashtags #GivingTuesday

You can start a Facebook fundraiser. Every fundraiser that raises $750 or more will also receive a Lasting Smiles lip care kit and limited edition sticker!
Another way to give is through our website. If you donate $100 or more, you will receive a Lasting Smiles lip care kit and a fun, brand-new sticker.

Thank you for being part of our community! As I said, the gratitude abounds with every day thanks to you.

Thursday, November 11, 2021

Virtual Training Program For Transition To Adulthood

Our friends at Georgia State University are offering a free, virtual training program for parents and family members of individuals with disabilities ages 12-22 on Thursday, December 9, 2021 from 6:00PM - 8:15PM. This single session training program has been developed in collaboration with GSU's Center for Leadership in Disability to increase knowledge and access to transition-related resources and services in Georgia. 

As you may know, individuals with disabilities often experience service delivery gaps upon transition to adulthood. Family members and individual advocates have reported a need for additional avenues for accessing information about adult disability services in the state of Georgia. To address this need, we have partnered with the Georgia State University’s Center for Leadership in Disability to conduct a research study on parent training programs for increasing knowledge of transition-related resources and services for individuals with disabilities. As part of this study, we will host a free, virtual training in collaboration with different agencies and service providers from across the state. This training is open to all parents and family members, regardless of participation in the research study. Training participants will be entered into a drawing to win a $20 Amazon gift card. Ten participants will be randomly selected to receive the gift card.  You do not have to participate in this study to be eligible to participate in this drawing or lottery. Anyone may enter the raffle by clicking on the link below. 


The parent training program will take place virtually on Thursday, December 9, 2021, from 6:00 - 8:15 p.m. In this training, live content experts will present on different services and resources available to individuals with intellectual disabilities, developmental disabilities, and autism spectrum disorder between the ages of 12 and 22.   


Topics covered in this training: 

  • Inclusive Postsecondary Education Programs 
  • Vocational Rehabilitation and Employment 
  • Independent Living 
  • Navigating State & Federal Funding Streams 
  • Experiences from parents and individual advocates 


Parents and family members interested in participating in this research study and/or training can click the link below. Questions concerning this study should be directed to Jessica Watson at [email protected]. Thank you for joining us in our efforts to support individuals with disabilities as they transition to adulthood. 

 Click Here To Register for November 9th at Take 

the Survey

Monday, November 1, 2021

Grateful For Gratitude: Tips For A Lifetime of Gratitude

Editor's Note: Let's kick of this month of thanksgiving with a post about gratitude. We are endlessly grateful for our interns, and the author of this piece is one of them. You can read more about Dhisha and her passion for positivity at the bottom of this post. For now, let's take a look at the impact a daily gratitude practice can have on all aspects of your life.

By Dhisha Kukalakuntla

It’s a known fact that showing gratitude creates a positive environment, whether it’s at home, school, work, or any random place. But studies have shown that being grateful can have many personal benefits on our body, brain, and mental health as well. 

There's a difference between showing gratitude and being grateful. When we show gratitude, we are letting others know that we are grateful for something. In general, we’re more used to hearing this because showing gratitude is linked to creating a positive external environment. 
Being grateful, on the other hand, has to do with personal fulfillment. Being grateful, in general, may have more effects on personal health and development. 

Regardless of whether or not we keep our gratitude to ourselves, thankfulness has been linked to better overall physical health. This doesn’t mean that saying “thank you” once a day will automatically mean we’ll have a healthier body. The correlation is indirect, but it makes sense; people who regularly practice gratitude tend to also show self-gratitude for their body and, therefore, feel the responsibility to take good care of it. 

Grateful people not only take better care of their bodies, but they have healthier minds too. Gratitude is shown to make emotions less toxic and more manageable. To put this into context, let’s say you’re stressed. The stress is overpowering and toxic, but when you take a moment to recall the positives of that day (i.e., talking to friends, having dinner with family, watching a funny video of a favorite actor, etc) and feel thankful for that, our mind regains the ability to manage those toxic emotions. It creates a sense of balance to help us take control of our own thoughts and feelings. 

Our self-esteem is also greatly impacted by gratitude. When we take the time to appreciate positive aspects of the world around us, we’ll be more likely to be thankful for aspects of ourselves. 

Thankfulness is also shown to help ameliorate psychiatric disorders like Post-Traumatic Stress Disorder (PTSD). Studies by UC Davis are looking into whether gratitude could combat neurodegenerative diseases (which include Alzheimer’s and Parkinson’s Disease) as well. 

Many of us would say we are grateful people because we say “thank you” whenever someone does something in our favor, but how many of us are consciously grateful? While verbally expressing appreciation is important, the key to the physical and mental health benefits of gratitude is in the deliberate expression of thanks. When we mean every “thank you”, take the time to explain why we are thanking someone, start a gratitude jar/journal, or write an elaborate appreciation letter, we are consciously showing thanks. Being purposeful with our gratitude will ultimately help us have more positive minds and healthier bodies. 

About the Author:

Dhisha Kukalakuntla is a junior at Talented and Gifted Magnet in Dallas. She’s an avid writer and  mental health advocate. Other than leading her school’s Journalism UIL club and Positivity club,  she founded Positivity 101 (positivity101.org) to promote mental health awareness and  mindfulness among the youth. 

Dhisha spent this past summer (2021) as an intern for CCA’s Outreach Director, Khadija Moten. We are so fortunate to the Dallas Mayor's Education Initiatives at The Dallas Foundation to have sponsored us for the third year in a row with a summer intern. She  spent the summer writing proclamations to various state governors and reaching out to schools  across America about CCA. Dhisha continues to advocate for children with craniofacial  differences and looks forward to further association with CCA in the future.

Saturday, October 30, 2021

Research Opportunity: Take This Survey On Insurance Coverage and Rare Diseases


Our friends at the University of Nebraska Medical Center need your help. Genetic counseling student, Michelle Willes is conducting "
a research study to better understand the experience of navigating payment and insurance coverage for medical costs associated with a rare disease diagnosis." She invites participants to complete this anonymous survey which will ask about their rare disease diagnosis, experience with health insurance coverage, and awareness of financial resources for people with rare disease diagnoses. The survey should take approximately 15-20 minutes to complete.




Monday, October 4, 2021

Follow Us On Twitter @CCAKidsTweet


Follow us on Twitter at CCA Kids Tweet. Image of small bird at top and all text in white on blue background. white children's craniofacial association logo at bottom above words "@ccakidstweet"
Follow us on Twitter @CCAKidsTweet

Explore our Twitter account while Facebook and Instagram are temporarily unavailable. Our social media account is just as vibrant and exciting on this platform, too. 

Saturday, October 2, 2021

Meet The McLaughlins

Another newsletter article coming at you from our July E-Network. Let's meet the McLaughlin family and learn more about Teddy's story. 

You can read more stories like the McLaughlin's in our newsletter archive or on the current E-Network webpage, too.  

We're the McLaughlin family, and our son Teddy is a Golden kid.

In spring of 2009, we had a beautiful 2 1⁄2 year-old daughter named Charlotte Charlee. I had a wonderful husband, Doug, and I was 36 weeks pregnant with our son Because I am a Type I diabetic, my OBGYN and I discussed for weeks when we were going to deliver the baby I had a lot of ultrasounds and other testing but they had not identified anything wrong except some extra amniotic fluid and somewhat erratic blood pressure. At this point, it was decided that I would go to the hospital for monitored bed rest. It was a compromise between my doctors and me. We were just trying to let Teddy cook for a couple more weeks. Teddy’s big sister, Charlee, had climbed into the hospital bed with me to watch cartoons, and Doug and my mom were chatting about plans for the next few weeks. It was late afternoon when the nurse came in and said that no one should leave yet. My OB/GYN was on her way in, and there was a good chance I was going to have our baby that night because there was something she didn’t like in my bloodwork. We knew that there was a chance Teddy’s lungs may not be fully developed, but overall, we were excited to welcome our son. It was March 31st, and as they prepped me for a C-section, we started taking bets about whether we would have an April Fool’s baby or not. We knew that either way we would have to spend some time the next day convincing everyone that Teddy had arrived, and it wasn’t just an April Fool’s Day joke. What we didn’t know was that our lives were about to change in a way we never imagined.

Theodore ‘Teddy’ was born at 11:17pm. They told me to kiss his cheek and whisked him away to the NICU. It was about 3:00am by the time they had Teddy stabilized and had me settled into a room. One of the neonatologists came in to see me. They let me know that Teddy was on a CPAP but was generally doing well. However, his ear was not formed on the right side microtia and atresia, and his lower jaw was smaller than normal micrognathia. At this point, there was no diagnosis. He spent 10 days in the NICU gradually learning how to eat and regulate his body temperature. He had failed his hearing test. When we took him home right before Easter on an apnea monitor. They told us to feed him every three hours around the clock, and he would likely “grow out of” most of his issues. We were also to followup with the neonatologist, geneticist, our pediatrician, and an ENT for his hearing.

Teddy spent the next 1 1⁄2 months struggling. When he was born, he weighed 6lbs 3oz , and we had no idea the amount of work it would take over the next several months to get him to 7lbs. He spent all his calories eating and breathing and wasn’t gaining weight. He looked like a puppy who has yet to grow into his skin, and he had a light blue tint to him. We had an appointment scheduled with an ENT from Children’s Hospital of Philadelphia CHOP because of his hearing issues. What we didn’t know at the time was that he happened to be one of the best airway doctors on the East Coast and was the blessing we needed. Up until that point, no one had really discussed with us the challenges Teddy was experiencing due to his small lower jaw. The first time that we saw Dr. Jacobs, he asked me a lot of questions that I didn’t have answers, Teddy still didn’t have a diagnosis, and the neonatologist thought he was doing okay. You could tell Dr. Jacobs was frustrated, but he had us make another appointment for two weeks later. The second time we saw him, he was very concerned. He started to make a list of the tests that Teddy needed, but then he stopped and said, “I’m going to get him a bed at CHOP. Feed your baby, and call whoever you need to.” Although it was scary when he told me to put Teddy in the car and take him directly to CHOP, there was also some relief. Hopefully, I was finally going to get some of the answers that we craved and some help for my tiny Teddy. It was challenging getting appointments in the real world, and Dr. Jacobs was the first to confirm what my “mommy sense” had been telling me all along that more was wrong than what they were saying. When we got to CHOP, Teddy saw just about every specialist in 3 days. We often refer to CHOP as one-stop shopping. They are great about coordinating appointments to minimize trips to Philadelphia and surgeries to minimize anesthesia. We would keep a running list of things for next time. They listened to my concerns and involved me in decision making. He was finally diagnosed with Goldenhar syndrome. He got an NG tube so that he would stop aspirating his food and didn’t have to burn as many calories working to eat. He finally started to gain weight a few ounces at a time. Dr. Jacobs, Dr. Bartlett, Teddy’s plastic surgeon, and the entire craniofacial team finally started giving us the answers that we were looking for since he was born.

About a week later, Teddy had a tongue-lip adhesion (TLA) in order to open his airway. Initially it seemed to be helping, but unfortunately, it became apparent around the 4th of July that it was not going to be the answer we were hoping for. We were told early on that kids with Teddy’s condition usually responded well with TLA surgery, but some would need jaw surgery and rarely a tracheostomy. I’ll never forget that night when I sat at the nurses’ station with Teddy’s plastic surgeon looking at his scans and talking about his options. His jaw was too small and fragile for distraction, and we would have to wait until his ribs were big enough for grafting. It was pretty clear that Teddy was going to be one of those rare kids who needed a trach. This was devastating to us initially, but we soon learned the doctors had a bigger plan for Teddy that would unfold over the next several years. This would be the first step to let him breath more easily, allow him to start putting on weight more easily and would eventually keep his airway safe as he learned to eat again, and most importantly let him stop struggling so much.

During this time, I moved into a room at the Ronald McDonald House in Philadelphia, another blessing. Not only did this provide me with a hot meal and a warm bed each night, but it also gave me an opportunity to spend time with Charlee and Doug outside of the hospital. We quickly formed a core group of friends who were also going through some of the same things. It was nice to have others who understood the ups and downs of NICU life. We all cried together during the rough times and celebrated together during the happy ones.

It rapidly became apparent that Teddy would rarely take the easy, straight-forward path. When he had a Nissen fundoplication to relieve his reflux and his G-tube placed, he ended up with dumping syndrome which required a special diet and careful monitoring of his blood sugar. In addition to his microtia and atresia on his right side, Teddy had a narrowed canal on the left side which also affected his hearing. We got him a traditional hearing aid on the left side early on, but he also ended up with several ear tubes placed in that ear to prevent the buildup of fluid which further affected his ability to hear.

In the days before Thanksgiving, we underwent all the training needed to care for Teddy, so he was finally stable enough to take home with nursing care. At home he continued to have physical therapy (PT), speech, occupational therapy (OT), and a teacher of the deaf (TOD), but his best teacher was his big sister, Charlee. She would get down on the floor with him and get him to do things that nobody else could. She adores her little brother and she was so happy to have us all home as a family again. In the spring when Teddy turned one, we had a huge party. We wanted to thank all the people who helped us get to that point as there were definitely times during that first year we weren’t sure we were going to make it.

When Teddy turned 2, he started in the Ivy Nursery at the Lake Drive School in Mountain Lakes. Around this time, Teddy also trialed a BAHA on a soft band. I was really impressed with how much his hearing seemed to improve. He would later have it implanted when he was older.

While at Lake Drive, we knew that it was important to teach him total communication so that he would have options to make himself understood. When Teddy was younger, sign language really helped to keep him from getting frustrated while he was having intensive speech therapy and learning to speak. It also came in handy when he was 5 and finally had his rib graft jaw surgery, and his jaw was wired shut for a month. We had planned on this surgery opening his airway and realigning his jaw, but it turned out that it wasn’t sufficient. Before he could be decannulated, he also needed to undergo jaw distraction, and before his stoma could be closed he had to have his adenoids removed again. Yes, they can grow back.

When he finally had a quiet, clean sleep study and could finally close his stoma, we were so excited. Teddy went to school at Lake Drive through kindergarten before transitioning to Wildwood in Mountain Lakes and then elementary school in our home district. After spending years traveling over an hour each way to go to school, it was a novelty to only drive across town. He finally got to ride on a school bus for the first time! Our district provided Teddy with a teacher of the deaf in the classroom full time in elementary school to help with learning strategies, to learn to advocate for himself, and to act as extra support. Now, Teddy goes to the intermediate school in town (5th & 6th grades) which is right around the corner from our house. He is down to minimal TOD support, and he is the primary person responsible for his hearing equipment.

When Teddy was eight, we had a discussion about his “little, closed ear” as he referred to it. This was a surgery that we had always intended to let him have a major say in. His inner ear had not formed on the right side, so opening his canal and recovering hearing was not an option. He went back and forth a couple of times before deciding to go forward with it. A couple of weeks after his ear reconstruction, we noticed that part of the graft didn’t take. This resulted in a second surgery to have part of the graft replaced. Like a lot of things in Teddy's life, it turned out to be more complicated than was originally planned, but he’s happy with the results, which is the most important thing. We’ve always been open to talking about Teddy’s condition. When he was little we made sure that Charlee and Teddy had age appropriate answers for questions that other kids inevitably had. “What happened to his ear? – It didn’t grow right in my mommy’s belly. The doctors will fix it when he’s bigger.” “What’s that on his neck? (referring to his trach) – It helps him breath better.” Most of the time, we would find that they were merely curious and would soon be off playing together.

Now that Teddy is older, we have done several presentations at schools, talking about his journey and the importance of kindness. Our first CCA Retreat was in Virginia in 2017. Diana Sweeney from CHOP called me and said that she wanted to send our family on Retreat! I wasn’t entirely sure what to expect, but when we walked into the lobby of the hotel, Teddy declared, “Mommy! These kids are all just like me!!” I instantly knew that we were in the right place. There was a group of boys who are all the same age as Teddy that quickly became friends. Charlee made new friends as well. Everyone was warm and welcoming. These were siblings and parents and kids that truly “got it.” When we arrived in Salt Lake City for our 2nd Retreat, we were greeted with hugs and happy tears.

It felt like not a day had passed, and we picked up right where we left off. Teddy is now a charming and amazingly resilient 12-year-old who dances (hip hop, tap, and jazz) and sings ("Hamilton" is a favorite) his way through life. He loves the beach, football and Minecraft.

He’s come a long way, but there are still a few things in progress. He’s on his third round of braces, trying to align his teeth and improve his bite. He still needs at least one more major jaw surgery at some point in the future. He’s still figuring out the right level of “sharing” with his new friends at the intermediate school. Most of them have no idea of how much he’s been through, just that the “box” on the side of his head helps him hear better.

To them, he’s just Teddy.

To us, he’s so much more.

Tuesday, September 28, 2021

Scholarships Available for Illinois Craniofacial Patients


The Face the Future Foundation is offering grants to individuals with facial differences to help them receive a college education. The $5,000 scholarship deadline is October 31st and is open to prospective college students in the Chicago, IL area. To learn more, go to the Face the Future Foundation website to read the eligibility requirements, learn more about the organization, and this scholarship opportunity. Best of luck to all whom apply.


Monday, September 20, 2021

Christine's Advice on Coping and Dealing with Grief and Mental Health

  By Christine Clinton

When I was a little girl growing up, the thought about losing a parent, or a loved one, never really crossed my mind. When I was six years old, my grandfather passed away; but I never understood the true meaning of death, or grief. Then, when I was twelve years old, my great-grandmother passed away. As I got older, I understood a lot more about death, and grieving the loss of a loved one. When I was 21, my grandmother passed away, and being in my early 20’s, I grieved my grandmother a little more than I did my grandfather, and my great-grandmother, because I was closer to my grandmother, and older. I have experienced the death of so many other loved ones in my life, and while I have experienced grief with each of the losses, the death of my father has been the worst for me. My dad passed away on May 25th, 2016. I had turned 40 years old in January of that year, and I had always thought that I would have my parents with me forever, although I knew death is inevitable. While my dad and I didn’t always get along, or see eye-to-eye, we both knew that we loved each other, and that was so important.

My dad always put his family first. His greatest joy was to see his family happy. He was always there for me, for every doctor’s appointment, hospitalization, and surgical procedure. Whenever I had any of my doctor’s appointments, he would make sure that he was home from work in enough time to take a shower. and get my mom and I to whatever appointments that I had. Whenever I was in the hospital, he would come home from work, come to see me in the hospital with my mom, and then leave to go home sometimes eleven o’clock or twelve o’clock at night. When I had my jaw surgery, he would bring my mom to my cousin’s house before he went to work. He would come to see me in the hospital after he got home from work, and then would go home with my mom late at night. He was always so happy, whenever I was happy. He never worried about himself, instead, he worried more about his family. My dad was a very hard worker, and while we had some struggles, we always made the best of whatever we had. He has three grandchildren, my nephews, who love and miss their grandfather very much.

Having a strong family connection and dynamic is so very important, but it is more important to someone like myself who has a facial difference. I don’t have a family of my own since I am not married, and I don’t have my own children. Having both of my parents when I was growing up, and as I got older, is so very important. I would love to have a family of my own, but I have struggled with that, and so I’ve come to accept my life as it is.

Since my dad’s passing, I have been trying to find some peace, and to come to terms with his death. Losing a loved one, or a parent, is never an easy task. Grief is so different, and each person grieves their own specific way. There shouldn’t be a timetable for grief, and no one should tell anyone how they should grieve, or for how long. I have a former acquaintance who told me that I shouldn’t be talking about my dad, or thinking about my dad; that I shouldn’t be grieving my dad. She said I had to live more of my life, and grieve my dad less. This hurt me so deeply. I’ve never forgotten that comment. We all grieve differently, and we all have different losses in our lives. No one should ever be made to feel like their grief, or their loss, doesn’t matter, or that they shouldn’t be feeling whatever they are feeling. We all have a right to our grief, and we all have a right to each experience a loss in our own very unique ways.

We could truly improve society so much if we removed the stigma around depression, grief, and especially mental health. It seems no one wants to talk about these things, because it is uncomfortable to talk about these things.

Fred Rogers from Mr. Rogers Neighborhood, has a very important quote. He has said, “whatever is mentionable, can be manageable.” He mainly talks about children talking to their parents, or a trusted adult about their emotions and feelings, or whatever the case might be; but it is also some very good advice for adults too. I think if more people knew more about depression, grief, and mental illness, and talked about it more, the folks dealing with it wouldn’t have to feel so alone with dealing with it.

We all need to be able to talk about how we feel. If we are able to talk about the things that are important to us, if we can make the things that are important to us mentionable, then we’ll be able to better manage our emotions and feelings. Adults, and children alike should have a trusted adult, or friend, that they can feel comfortable enough with being able to talk to; we all need someone in our lives who we can trust and turn to with our deepest feelings.

In conclusion, if we were all able to express our emotions and feelings, and be able to talk about our grief and our mental health with those whom we are able to trust, and if whatever we feel is mentionable, can be more manageable, we would be living in a much gentler, kinder, and loving society. Reach out to those who are struggling emotionally, or with their grief, and mental health. You would be very pleasantly surprised how much people will share with you, if only someone would listen to them.

Monday, September 6, 2021

Ask The Adaptive Athlete Returns With Rugby Player David Garcia

This story appeared in our 2020 CCA E-Network. David Garcia had just graduated from Brown University with a doctorate in chemistry. His next challenge was to start training for the 2024 Paralympic games as a rugby player. Read his story here reposted for your inspiration during CAM2021. 


“Adapt...persevere: because you are limitless.”

David Garcia, newly-minted doctor of chemistry from Brown University, is here to remind you that anything and everything is possible. He believes he holds the “blueprint of success for people with disabilities.” He challenges us and asks, “What is your excuse?”

David was born with Moebius syndrome, partial upper limbs, and no feet. He is the oldest of five born into a first-generation, Colombian immigrant family, living in New Jersey.  In his own words, nothing has ever held him back. In May 2020, he successfully defended his Ph.D. thesis in chemistry. Next up, he is training for the 2024 Paralympics. 

Life became easier for David once he accepted his body. There were moments of doubt, and plenty of questions from others like “what is wrong with your feet and hands?” David says, he “remembers the moment when the universe presented him with two options: to be consumed with self-pity or the second, to face my reality, accept my disability with all its challenges and refuse to be defeated.” Through the encouragement of lived experiences and a loving family he continues to preserve, to take every moment of adversity as an opportunity to grow. 

At age five, while surrounded by the bright lights and sharp tools in the operating room, enduring surgeries to improve the function of his eyes, mouth, and left hand, David realized that his “life was extraordinary” and he “had to be brave in the face of adversity.” 

He says, “Those surgeries, without a doubt, made me stronger and provided me with the courage to accept my reality.” 

As a child and teen, David says, “Every single step was a struggle. From the moment I could walk with my little prosthetics every step was a fight, a fight I learned to embrace.” He also struggled to accept his appearance. One day while putting on his prosthetics, he told himself “in order to play futbol, run, and have fun, I would have to put on my prosthetics everyday for the rest of my life.” While David has never looked back, each day was a struggle he had to overcome, mentally and physically. 

As early as elementary school and middle school David refused to be treated differently and rejected help from well-intentioned occupational and physical therapists. David says, “I taught myself to write with two hands, play fútbol with prosthetics, and perform in a band with soul.” During a trip to the beach as a child, he fondly remembers his mother telling him, “‘Davidcito, take off your prosthetics, enjoy your life, and jump into the water! Who cares if people stare at you?” Ultimately, she was right… “No one cares... but at that age it was difficult for me to share the same vision,” he recounts.

Now he can look back and realize these were seminal moments in his life. He muses, “I still feel insecure about my disability. Today, the difference is that I have learned to express self-love and embrace all my imperfections unapologetically. I have learned through self-reflection that my limb difference is not a weakness, but rather a shield that has given me the strength to forge my own path. I have learned that I am limitless.”

Today, David trains four to five times a week for one and half to two hours varying his workouts, alternating among the many muscle groups throughout the body with special attention to chest, biceps, triceps, shoulders, and abdominals. He begins with a lengthy warm up that includes stretching, 50 pushups, 10 pull ups, and 5 to 10 minutes of cardio. He concludes with more cardio and stretching after focusing on that day’s strength training.

For those interested in starting or continuing an exercise routine, David encourages that you define your goal by asking yourself “What am I looking to achieve? Then, once that is decided, you develop a fitness and nutritional plan that works for your body. The most important thing is to stick with your plan and see it through till you meet your goal.” 

Commitment to the cause is vital in this adaptive athlete’s opinion. A big piece of motivation may come from your past, remembering what you went through and overcame as a child. David says he was “empowered by my past successes, I never give up and [I] stay true to my vision. I remember the challenges I overcame, learning how to write with a pencil, learning how to shoot a basketball, learning how to ride a bike.” All of these successes were possible because he chose to adapt and persevere.

As you can see, in order to excel and work out at an elite level, a bulletproof mindset is required. David’s focus on how to adapt and preserve to meet his physical fitness goals also helped his mind become more nimble, too. Choosing to lift weights, play rugby, and just move is a powerful outlet for feelings of insecurity and powerlessness.  

“Exercising was always the key to keeping my stress and anxiety levels low. In fact, the less I exercised the more disordered my life was, and the more anxious I felt. So overall, exercise is crucial for maintaining my mind at equilibrium.” 

His next challenge will be training for the 2024 Paralympic Games as a wheelchair rugby player. He was recruited by his home country of Colombia to participate and compete for an olympic medal. David says he looks “forward to representing Colombia in the Paralympics and in the International World Cup tournaments during the next 4 years.” In between workouts, and rugby practice, David is pursuing motivational speaking and modeling in order to share his story with a broader audience. David also supports Positive Exposure, a New York-based nonprofit founded by award-winning photographer Rick Guidotti, that “is committed to creating opportunities to empower, support and embrace our disability community as well as all individuals and communities at risk of stigma, discrimination and exclusion.” As a member of the action committee, he is a living ambassador of their motto, “Change how you see, see how you change.”

Read more about David Garcia, his journey to acceptance, and why he wants to share his Moebius syndrome story with us on the blog at http://www.ccakidsblog.org/search?q=david+garcia (https://tinyurl.com/y9yqxly6)

Please follow David on Facebook, Instagram, and Youtube at @davidgarcialimitless. 

Saturday, August 21, 2021

Celebrate CAM2021 With These Picnic Hosting Tips

By Kara Jackman

In the summer newsletter we suggested some ways to throw the best Craniofacial Acceptance Month picnic ever. We hope this newsletter article help you as you plan for a fun day of family, friends, nd acceptance.

Believe it or not, as you’re soaking up the summer sun, we are preparing for September! Craniofacial Acceptance Month is just a couple months away. Planning a successful CAM picnic should start now. Here are some suggestions for planning and hosting a top-notch event to raise awareness and celebrate our craniofacial families.

Find A Cool Location & Create Your Guest List

Location location location! As important for a party as looking for a new home, we suggest you find a great space. Consider a local park, beach pavilion, or set up in your own backyard. After a year and some change inside, everyone wants to spread out in the sunshine, so be sure there are plenty of spots for all your guests. It is wise to base the amount of space you will need on the number of people you plan to invite.

State or city parks are great because many are free to use, and provide cool amenities like grills, picnic tables, pavilions, and bathrooms. A playground for the kids is always a crowd pleaser. Be sure to check with your local municipality or recreation department to make a reservation (if that is required and/or allowed), get a permit, and/or pay a reasonable deposit or fee. If it is first come, first serve, you may want a volunteer to go early in the day and stake out the location with some signage and decorations to hold your spot. If possible, include a map and detailed instructions on your invitation, and include a day-of contact number, so people can reach you if they are lost or have something come up.

Invite Your AND Our Friends - Publicizing Your Picnic

CCA is happy to share your picnic location and details with friends in your area. Our database is filled with families you may or may not know. Let us help invite people and publicize your picnic. We are here to help! For instance, if you require RSVPs, you can count on 85-90% of your “Yes” RSVPs to show up. If you do not require RSVPs, it will be harder to estimate a headcount, but the rule of thumb is that roughly only 30-50% of your total invite list will most likely be there on that beautiful day in September.
Pick A Day That Works For All

Some may say the date may be just as important as the location. Choose a day that avoids federal, local, and religious holidays. September is also back-to-school month, so be mindful of fall school events, too. For instance, CCA has selected September 11, 2021, as our region’s official picnic day. We chose this day as it works best for us. However, you can choose the date that works best for you and your community. Since our headquarters will be celebrating on a day of national remembrance for many across the country, we have decided to include an activity where we will write “thank you” notes for first responders, followed by a moment of silence for everyone who was impacted on September 11, 2001, 20 years ago. If your picnic falls on that date, we encourage you to do the same.
Forage for Food

Food - It can make or break a party! You have a few options here. For years, we had our picnickers bring their own brown bag lunches. It’s the easiest way to make sure everyone’s needs are accommodated, but you have to notify guests to BYOLunch on your invitation.

If you plan to provide food, first, thank you for your generosity! Make sure you have a wide variety of snacks from the savory to the sweet to keep your guests' mouths watering. Variety also allows your guests to decide what works best for their dietary needs and food sensitivities. (Just make sure you ask the location or look for signs that state what their policies are about bringing food to your picnic place! At the very least, you must assume you’re responsible for proper cleanup and disposal of all food and paper products.)

Another option is to have each family bring food in a potluck style. If you go this route, we suggest you create a Facebook event or Google form for your attendees to sign up for things to bring. You don’t want a party with 15 dips, and no chips! Don’t forget to have someone bring disposable cutlery, plates, and napkins!

Finally, many CCA families have had great luck contacting local eateries and supermarkets to see if they are willing to donate food from their stores. Bottled water is a popular donation item and will keep your guests hydrated on hot days. Many local BBQ restaurants are often amenable to this type of donation, and CCA is proud to have our local chain, Spring Creek Barbeque catering our picnic! (CCA can provide our tax exempt letter for charitable donations and sample request letters. Contact us for more information.)
Organize Entertainment & Activities

Entertainment is vital for a poppin’ party. From music and crafting to sports and games -- pick what works best for your family and friends. Wiffle ball, an acoustic concert, a talent show, cookie decorating, face painters, a DJ, or painting “Kindness Rocks” are fabulous ways to keep your guests engaged.

In past CAM picnics, friends invited special guests to their events. A local celebrity (sports figure, local TV news personality, high school mascot), or local government representative (mayor, councilman, state senator), first responders (firefighters, police, and EMTs) could really give your CAM picnic the draw it needs to make a bigger impact.

Invite the press using our CAM press release, and don’t be shy! We encourage you to tell your story. Posters filled with pictures and definitions created by your family about craniofacial conditions will showcase your journey. For an added bonus, share how CCA was able to help your family embrace the craniofacial journey.
Party Favors

CAM picnics intend to promote awareness and acceptance! Make sure your guests leave informed! Contact Annie Reeves for CCA brochures, signage, newsletters, and other printed material that we can mail to you, free of charge. Folks will be able to bring them home to peruse throughout the year and share with their own teachers and librarians. Craniofacial Acceptance Month does not end in September. If you leave an enduring impression with your picnic, these resources will increase compassion and reduce the amount of teasing and questions in the years to come.

You can also shop our webstore for low cost party favors like stickers, vinyls, pencils, and bookmarks with our #ChooseKind slogan on them to share with your guests, too. If you contact us directly, we always give CCA families a bulk discount. Purchase higher price items for silent auctions or raffles -- these might include our logo silicone glasses or New Balance pullover.

You’ve Got This!

Have a great time! Take as many photos as possible or consider asking a photographer to volunteer their time for the day! After the big event, please email Annie ([email protected]) with a short description of the day’s events, exciting special guests, the yummy food you served, and a few (or all) photos you took, so we can publish them in our next E-Network newsletter, and watch our CCA family advocate acceptance in action.