Monday, April 30, 2018

Southern California Families Join Camp Cosmos on July 22nd for Summer Fun!

Get ready for Summer right now! Camp Cosmos helps Southern California kids born with facial differences connect with each other in a fun, and creative environment. The day camp is free to participants. Learn more about this great day on the ConnectMed website and in the flyer below.  

Wednesday, April 25, 2018

Family Spotlight: P.J.'s Birth Story & Advice For New Parents

By Crystal Kouri
Surprise, your baby was born with Treacher Collins Syndrome! Your delivery was not the beautiful experience that you had expected. You may have had a lot of warning signs during the pregnancy that may have been overlooked and you feel let down by your doctors. You probably labored for days in the delivery room -- probably much longer than what is considered to be normal. And then all hell broke loose. You are not alone.
Here was my experience and the raw feelings I felt  after giving birth to my beautiful baby boy, P.J, born with Treacher Collins Syndrome.
(L-R) Jono Lancaster, P.J., Paul Reynafarje, father,
and Crystal Kouri-Reynafarje, P.J.'s Mom 
Finally, after days of contractions, I was induced due to severe polyhydramnios. Four days later, P.J. finally came out. His dad and I were both crying with joy and relief. They put him up on my chest for the first time. The doctors and nurses did a double take and immediately took him back. Being our first baby, we were so confused as to why they would take him back?
We had not even seen him yet. What was wrong? They kept him in the room for a few minutes as dozens of people rushed in and out. And then everyone rushed out of that room with him.
My husband followed them down the hall. He came back a few minutes later repeating their words,“Treacher Collins.”
Treacher Collins? I don’t know what that means??? As I’m still crying on the delivery table with my lifeless legs in the stirrups, my husband Googled Treacher Collins. We quickly learned that the internet is a very scary place. We were bombarded with all kinds of images of the most severe cases. Scary, considering we had not really seen our baby yet.
I lost it! Lost it on a level I have never experienced before. Complete hysteria set in. I remember apologizing to my husband thinking that I had done something wrong. Was I too old? Did I work too much? I did my fair share of complaining throughout the pregnancy. Was the universe, or God, punishing me for taking my pregnancy for granted?
My husband invited my parents and sister into the room to calm me down. They knew when the baby was not  there that something was wrong, but the did not understand why I was so upset. Everyone was silent as my husband read them the definition of Treacher Collins as written in the  Wikipedia entry he found on the syndrome. My family just looked confused as he read a bunch of complicated medical terms.
I finally said, “show them.” I’ll never forget the looks on their faces. Shocked, silent, awkward and scared. Is this what I will see for the rest of my life when people look at my son?
At this point everyone was in tears and trying to console me as I hysterically rattled off all of my concerns for his future - acceptance, friends and most of all, bullying. Medical needs can be treated and overcome, but emotional scars are so much more severe. Why was my child being punished? Why would the universe, or God, allow this child to be born into such cruel, emotional circumstances and medical hardships?
I completely shut down. I didn’t want to talk to anyone. Locked myself away and cried for two days straight without any food or sleep.  I had publicly posted about going to be induced on my social media accounts. I shut it all down! - I deleted everything and hoped people would not notice.  
When my husband finally talked me into going to see the baby, he didn’t look so bad. Cosmetically, he is a mild case, which was relieving, but he still has the classic medical problems that Treacher Collins babies have to endure (breathing, eating, and hearing). The bigger issue was that I wasn’t feeling a bond with him.
Over time, P.J.and I developed a bond. I love him so much. Energized by my personal experience, I want to give back to the craniofacial community. On Sunday, April 22nd, we hosted two charitable performances at Le Petit Cirque to help raise funds for P.J.’s hearing aids and the Love Me Love My Face Foundation. The two performances were a success. Still, I feel called to do more. I want to help other new parents develop a bond with their children born with facial differences. Here are my tips on how to handle the birth of your baby that also happens to have Treacher Collins.  
First, do not let anyone make you feel guilty for not feeling a bond right away. My husband was kind enough to give me the time I needed before I went to visit P.J. in the hospital. He did not pressure me to go with him. Everyone processes feelings in their own time. I encourage you to keep trying to go visit. One time, out of nowhere, and for no reason, it just happens. Instantaneously, you will fall in love with your baby. You will still be scared as ever, but in love! This child is now your child and you were meant to protect and nurture him or her.
Secondly, if you are not ready to talk publicly about the your child’s facial difference... DON’T! Have someone tell others about the circumstances of your situation, that you need space and privacy during this time. You can announce the birth of your baby when you are ready!
Crystal Kouri-Reynafarje and P.J. at the
Le Petit Cirque charitable
Thirdly, you did nothing wrong! In most cases, Treacher Collins and other facial differences happen because rare, genetic mutations occur at the time of conception. It is no one's fault.
Finally, and perhaps most importantly, CONGRATULATIONS on your new baby. Not many people will say that to you at the beginning of this journey. In fact, I’ll say it again.... CONGRATULATIONS!

Saturday, April 21, 2018

Southern California Families: Save the Date for Summer Fun At Camp Cosmos, July 22, 2018

Get ready for Summer right now! Camp Cosmos helps Southern California kids born with facial differences connect with each other in a fun, and creative environment. The day camp is free to participants. Learn more about this great day on the ConnectMed website and in the flyer below.  

Friday, April 20, 2018

A Circus Performance with Heart Will Help SoCal Family, CCA, and Love Me, Love My Face

By Crystal Kouri 

Our son P.J. was born with Treacher Collins. The birth was a surprise and an opportunity to exercise compassion for our son and other children born with the same syndrome.
My son, P.J., faced many challenges in a short time. He will continue to need more surgeries and procedures throughout his life. He spent the first nine weeks of his life in the NICU. He had a mandibular distraction and a G-Tube placed before he was allowed to come home.  He has three more major surgeries scheduled this year. They include, one to repair his cleft palate, one to remove the hardware in his jaw, and one to remove parts of his skull to treat his recent craniosynostosis diagnosis.  P.J. also needs a Bone Anchored Hearing Aid, or BAHA, which is not covered by insurance.
Little did I know that P.J.’s medically-necessary hearing aid would lead to an opportunity to help others, too.
While posting about his hearing device on Instagram (a platform that I use to communicate with other TCS moms while spreading a bit of kindness), Nathalie Gaulthier, my dear friend and owner of Le Petit Cirque, suggested that I do a “Go Fund Me” page to raise the money for his BAHA.  I was reluctant about the idea, so she suggested doing a Le Petit Cirque show to raise the money. I found that idea more acceptable, because we would not only be raising money for P.J.’s medical expenses, but we would also have the opportunity to raise awareness.
I felt that the Le Petit fundraiser had a greater purpose than just raising money for the hearing aid. Circus performers were often ridiculed and called “freaks” as they were part of a spectacle called the “freak show.” Today, they are embraced and admired for their talents and differences.  The cirque show and the history of its performers aligns perfectly with the message of acceptance we strive to portray through P.J.’s experience.
After agreeing to Nathalie’s idea for a charitable event, I began planning two shows that would be impactful and successful. Since I have been in the entertainment industry for 20 years, I decided to do my best to use my contacts to grow the show, and grow we did. Nathalie and I have been working around the clock. We want to not only put on a great show, but, also, to drive home the Choose Kind message focused on acceptance and positivity to others. We are so honored that Jono Lancaster, motivational speaker and founder of the Love Me, Love My Face Foundation, will be flying in to speak at the event. Erica Mossholder, Executive Director of Children’s Craniofacial Association (CCA), will speak about her organization and the support they provide to individuals living with craniofacial conditions. Everyone can look forward to a number of celebrity attendees that committed to being there at the performances on Sunday, April 22nd at 2PM and 6PM.
Considering the Le Petit Cirque show’s success and recognizing the importance of giving back, I decided to donate a percentage of the proceeds to CCA and the Love me, Love My Face Foundation.  As a thank you to Nathalie, my handy husband and P.J.'s grandfather, also built new wooden platforms for Le Petit Cirque’s theatre chairs to create stadium seating for their studio where the event will take place and the young circus performers practice.
Organizing this event has been nothing short of a whirlwind of selflessness, people helping other people, and working together to create something beautiful and heartfelt.  It has been a wonderful experience and I will be so proud to one day tell my son that he was the inspiration behind this magical show.

Two Le Petit Cirque Charity shows will take place on Sunday, April 22nd, 2018 at 2PM and 6PM in Inglewood, CA. The 2:00PM performance is sold out, but tickets remain available for the 6:00PM show. If you are in the Southern California area you can purchase tickets at this Eventbrite page.

2018 Retreat Deadlines & Early Itinerary

Symposium: The symposium schedule is still being finalized and I thank you for your continued patience regarding this matter.

Retreat Photo for Program and signed Photo/Video Release Forms: Thank you to everyone who has emailed me your photo for the retreat program and your signed photo/video release forms. If you have NOT sent in one or both of these items, you will be receiving a separate email reminder later today. The LAST day to submit the photo and signed forms is May 1st.  

Below are some important deadlines and additional information about the events taking place at the retreat. PLEASE be sure and read thru everything. J

May 1st: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture.

May 30hLast day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax.

May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)

June 1st: Deadline to let me know which meals you and your family will NOT be eating.

Annual Retreat and Educational Symposium Itinerary 



Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!

Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.


Breakfast will be provided
Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.

Lunch is on your own

Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.
Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place on Friday night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration on Thursday. Registration will be taking place from 11:00am-3:00pm. (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.

Teen Night (Ages 13-19): If your teen will be attending Teen Night on Friday, they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool. I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me.

CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at 8:00pm which will be located in the Olympus room.

Breakfast is on your own
Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!
Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28th.

Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from 11:00am-1:00pm.

Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…

BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!

Sunday, April 8, 2018

Southern California Families: See Le Petit Cirque on April 22nd For Free!

Buy Tickets Today!

Follow this link to purchase tickets and learn more about the Le Petit Cirque performance on Sunday, April 22nd at 7:00PM. Get Tickets! »

Southern California families, you are invited to two benefit shows by Le Petit Cirque on Sunday, April 22, 2018. The two performances of "The Magnificient" will benefit CCA and Paul Patrick "PJ" Reynafarje, a sweet new addition to our community recently born with Treacher Collins Syndrome. 
This one-of-a-kind performance by Le Petit Cirque will feature professionally-trained youth dancers, aerialists, and contortionists, who will perform the great physical feats from Cirque de Soleil shows. Last year, Le Petit Cirque, performed at the 2017 Nobel Peace Prize Concert featuring John Legend. Watch the video to see these awesome kids in action!
"The Magnificient" performances will take place at Le Petit Cirque in Inglewood, California on Sunday, April 22, 2018 at 2:00PM and 7:00PM. There will also be several CCA families in attendance plus Jono Lancaster, UK activist and motivational speaker, will be presenting at the shows and mingling with families in attendance.
The generous family behind this event are offering free tickets, one per family, to children associated with Children's Craniofacial Association. Currently, the 2:00PM show is very near sold out. Contact Erica Mossholder to inquire about free tickets for the show.
PJ and his supportive friends and family will also donate a portion of the proceeds from ticket sales to CCA to help a family attend the Annual Family Retreat and Educational Symposium.
To learn more about PJ, "The Magnificient" Le Petit Cirque performance, and to buy tickets, go to the EventBrite Page.

Saturday, April 7, 2018

CCA Wonderkid Wins International Writing Prize

Ely Potter on the United Nations floor. 

How many of us can say we are award-winning writers? Well, CCA Kid, Ely Potter can now call himself one after writing an essay about The Future of Peace for the International essay contest organized by the Lions Club. Potter won $5,000 and a trip to New York City where he will be honored at the United Nations. Wow! How incredible!  

His mother Jamie wrote to CCA to tell us that Ely said he wanted to send his gratitude to the organization. Ely says, "I want to thank CCA, all those people always made me feel like a normal person." Ely says, "He especially wants the kids like him to know they can really achieve anything they set their minds to. And just because other people call you different, different is sometimes a very good thing to be!" 

First the Potters found out that Ely had won the district level contest, which pushed his essay further along to the state level in Delaware. Guess what, he won that too! Days later the family was informed via email that he won the Lions International Essay Contest. Here is the email from Lions Club International awarding him the prize. 

Here is the text of Ely Potter's essay on peace and his impassioned plea for nonviolence. 

Ely, we hope to see more work written by you. From one writer to another, keep up the good work!

Ely Potter does a video interview in
New York City

There are many fabulous things that the human eye can see and our hearts can feel. Many of those things can be the darkness of pain and depression. Most of those feelings come from chaos and destruction. But know this now, the eternal feeling we know as peace can be stronger than those negative feelings. When there is peace no darkness or evil will corrupt our world. Earth might seem chaotic and deadly with all the murders and natural disasters going on across our planet. People are fearful; people are drained out; but how do we overcome these obstacles? I’ll tell you... with peace that many of us have stored somewhere in our DNA. Many brave men and women have reached out to the troubled ones and pulled them out of the deadly waters and into the peaceful light. Many people helped those who were in great danger by giving them fresh food, games, friendship and helped them back onto their feet again. Does this tell you peace can be in anyone?

It is time to let peace guide us not only in catastrophic times but on a day to day basis. Many people think peace is like what we see in superhero movies. A superhero isn’t just a man with laser vision but are ones that bring peace and sweep away the danger that surround our world.

Martin Luther King Jr is one of the most flawless examples of a peaceful figure. He says ”I have a dream…” more times than anyone. Well, I have a dream to persuade the readers who are listening to my words that peace can never be passed by. Peace is the strongest weapon. It may not fire bullets but it can change the most powerful substance in a villain or a normal average Joe; their hearts. Peace can also spread out of the blue, thus it can be created. In fact, you are creating peace right now. Do you see? Peace isn’t something you can physically create. It is created within your heart, brain and actions. Peace can be quietness, calm, and breathtaking.

Everyone who is reading this drop your blood boiling fists. If we all can have clean hands in this world, everything that came out of pandora’s box would be sucked back up except for hope which all of us hold inside our hearts. With weapons gone and hearts brighter than heaven itself, we will all enter a new world; a world with not only peace but non violence. I might not be in that new world but I can see it through my crooked eyes and my foggy glasses, and most of all I can feel it in my heavenly heart because as I said,”Peace isn’t an object that you can touch it's something you can feel.” This is how I see peace in the future as a nonviolent world. Even though I can’t see well through my two eyes I can see it clearly in my heart.

Friday, April 6, 2018

Orofacial Cleft Genetics Study Made Available Through Gabriella Miller Kids First Pediatric Research Program

Our friends at National Institute of Health's Kids First shared with us the findings from their research study on genetics surrounding orofacial clefts. Read all about the genetics behind this craniofacial difference. Many thanks to Gabriella Miller Kids First Pediatric Research Program for sharing this information with us. 

The Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First) is pleased to announce that whole genome sequence data for the “Genomic Studies of Orofacial Cleft Birth Defects” project (Accession Number:phs001168.v1.p1) are now available for access through NIH’s Database of Genotypes and Phenotypes (dbGaP)

This Kids First cohort was selected for sequencing in 2015. Additional datasets from childhood cancer and other structural birth defects patient cohorts, selected through our X01 projects are forthcoming. 

To view abstracts for additional Kids First X01 projects and estimated data release dates, visit: and the Frequently Asked Questions page for guidance on how to access the data.

For questions, please email: [email protected]. 

Thursday, April 5, 2018

Cards For CCA!: The Millers Sell Notecards and Stationary with "Cards For A Cause"

Our friends, Sarah Miller, and her daughter Ellie, are selling note cards to benefit CCA. A private donor will make a $13 matching donation to CCA for each purchase made. Each $30 order will net CCA a $26 donation to help kids receive the medical care they need, quality, medical information, and the distribution of the book, "Wonder" to schools around the country.
Please read this family's story below. 

Donate by following this link!

At just 2 months old, our oldest child, Ellie, was diagnosed with a rare skull deformation called Metopic Craniosynostosis.  

When a baby is born, the skull has open fibrous sutures (2 on each side, 1 in front, and 1 in back) which allow the skull to expand while the brain rapidly grows during the first year.  By 1 year old, these sutures have usually fused together into hardened bone. Craniosynostosis is a condition in which one or more of these sutures prematurely fuses before it is supposed to, causing the skull to grow abnormally and the brain to not have enough room to grow.  This deformation occurs in roughly 1 out of every 2500 births and has many different variations. Ellie’s specific form was a very severe case of the front/facial suture (the “Metopic” suture going up her forehead) to be closed upon birth or very soon after. This caused the front part of her skull unable to expand, constricting her frontal lobe and causing her head to have a triangular shape by 2 months old – which was when it was noticed by our pediatrician.

Ellie needed to have an invasive, 10 hour long surgery on her 5 month birthday (they would have done it earlier but she was too small, only 13 pounds on surgery day).  Ellie’s “cranio-vault remodeling” (CVR) surgery happened on March 19, 2014. It took 10 hours, by her neurosurgeon and plastic surgeon at the Cleveland Clinic, and involved a very expensive “first haircut” resulting in a now hidden permanent zig-zag scar on top of her head from ear to ear.  A large part of my tiny baby’s skull was removed, reshaped, replaced and screwed back together. We were in the hospital for 5 days, most of which was spent in the ICU, with our unconscious baby, bruised and swollen, drugged with morphine and the rhythmic sound of the breathing machine keeping her alive.  The day when she finally woke up slowly, OPENED her eyes, looked at me, and cooed softly, is a day just as precious to me as the day she was born. Ellie came home with a tube still in her head for a few days but was back to her happy self and a whole new look (which, as a mother, also took a little getting used to…).  She is so strong. It is crazy how, in just a matter of days, her resilience and smile made the whole ordeal seem almost like just a dream…

Unless you know about it, looking at her, you don’t know what she went through 4 years ago.  Ellie is beautiful, loving, and sharp as a tack. Although still present, her condition is hidden to most, and we know how lucky we are that this was ALL we have had to encounter.

Families like ours are receiving this news all the time about their new baby.  Many times they are completely blind-sided by the news like we were; thinking our child was ‘perfectly healthy’ going into our standard 2 month check-up only to find out there was a massive surgery in our near future.  

For Ellie, we are raising money for the Children’s Craniofacial Association which is a non-profit organization dedicated to improving the quality of life for families affected by facial differences.  CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to these conditions. This is a fantastic organization and one of the many we used throughout our cranio journey.

Cards for a Cause is an amazing fundraising program from Usborne Books & More and we are using them to raise money for the Children’s Craniofacial Association.  Each box of greeting cards costs $30 and includes 30 individually cellophane-wrapped beautiful cards, many with special embellishments. You can choose “Thanks & Blanks”, “All Occasions” or “Kid’s Birthday”.  Designs are not guaranteed and will vary. With each box sold, $13 will be donated to the Children’s Craniofacial Association. We have also partnered with my husband’s company, Graco Inc. who will be MATCHING every $13 we raise for CCA! So, that’s $26 raised with each box!  

If you live in the immediate Stark County area, I can personally deliver your box of cards. OR you can pay for additional shipping

Please help us in spreading our story.  It was very difficult for us to find support and information about Ellie’s condition at the time.  Craniosynostosis awareness is very important and your donation to the Children’s Craniofacial Association can help families like ours during this stressful journey.

Thank You~ Sarah

Monday, April 2, 2018

April 2018 The Mighty Writing Prompts

Here are some video and writing prompts from The Mighty Editor-In-Chief Megan Griffo. Look them over, see if wish to take the challenges using the medium of your choice. 

Before I dive into this month’s challenges, let’s chat! We’d love for you to submit a 20-second-or-so video answering a Mighty question below.
So much of our relationship exists through a computer screen. This of course makes it possible to have contributors all over the world (which we love), plus it means we can work faster (which you love) — but we wish we could get to know you more. We would love for you to participate in a Mighty Contributor video. Our goal is to collect your stories, see your faces (or signs) and share it with you and the rest of our Mighty community. We want to hear what it means to be in this community and what it’s felt like to share your story on our site. You are by no means obligated to join in — but, if you are interested, we invite you to follow the instructions below!

Record yourself on your phone and answer one of the following questions:.
  • Why do you share your story on The Mighty?
  • What is something that’s happened to you as a result of sharing your story on The Mighty? (i.e. someone reached out to you, you saw a comment that meant a lot, you encouraged someone to seek help, you felt cathartic in your own health journey, etc.)
  • What does “being Mighty” mean to you?
A simple and easy guide for filming your own video:
1. Hold your phone horizontally.
2. Answer the question in 10-15 seconds.
You can watch an example here. (Our parenting editor Ellen made this example for World Down Syndrome Day. She went a little over the time limit because she repeated the question. You do not have to repeat the question and you’ll shave off a few seconds). You can record this communicating any way you like — sign language, with a PECS board, with an app — anything goes. If you don’t feel comfortable being onscreen, you can also record a sign or piece of paper with your response on it. Please do not feel pressured to do anything that may be uncomfortable or stressful for you.
And now, onto your April blogging challenges:
1. How would you explain your condition or a part of your condition — with a drawing? We know you’re writers, but sometimes making a quick and simple visual can help explain complex things. Submit a sketch, graphic, photo — anything visual — along with a post that further explains what others don’t understand about this and why you choose to draw it this way. You do not have to be an artist to try this. In fact, we’d encourage you “non-artists” to join in.
Here are some a great examples:
2. Have you ever gotten a text that was exactly what you needed to hear while dealing with a health condition? What did it say, and why was it meaningful? If you have a screenshot of it, please include it.
3. Is there a part of your condition you deal with that others with your condition, for whatever reason, do not relate with or experience? Tell us about it. (Maybe we can find a reader who’s going through it too!)
4. Spring is here! Many of us love this time of year — others, not so much. How does springtime affect your or your loved one’s condition, for better or for worse?
5. So many of our conditions also affect our mental health. If you relate, describe a moment you realized your mental health was affected by your condition. Why does this moment stick out to you, and, if your mental health is negatively affected, how do you cope?