Friday, June 14, 2019

#WonderWednesday: Grace Shares Her Story Via Skype with Virginia Students

Grace Anto spoke to seventh and eighth grade Frances Hazel Reid Elementary School students in Leesburg, Virginia. Grace spoke about her facial difference and shared her personal experience as it relates to the book Wonder. She also went above and beyond, teaching the students about ICQ (introduce, compliment, and question), interpersonal skills to help improve the students relationships with one another. The teach tweeted, "Grace has a craniofacial condition. We were so lucky to Skype with her today.Always be kind and just because someone may look different doesn’t mean they don’t like or can do the same things you do."

Another teacher reflected on the Skype experience, too. She said, "Loved that Grace started by making connections with the students about what they had in common. This was an amazing presentation and SKYPE experience that the students and teachers will never forget! Grace touched many hearts at FHR.” Thank you, Grace for being of service to our community and sharing how to choose kind! 

Monday, June 10, 2019

Dillon Reflects Poetically About His Brother and Best Friend

Credit: Eric Lucas Facebook Page

By Dillon Lucas

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

My Best Friend

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

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

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

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

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

Saturday, June 8, 2019

Hannah's A Success!

Editor's Note: As we celebrate Apert syndrome awareness month, we thought some stories were in order. Meet Hannah Brown from Fox River Grove, Illinois. She loves going to Myrtle Beach, SC on vacation, kayaking, and shopping. In this reflection she tells us what her life is like with a person that has Apert syndrome.

Thank you, Hannah for helping us raise awareness this month.

By Hannah Brown
Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.
I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.
In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.
A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.
Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.
Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything. 

Tuesday, June 4, 2019

Thank you, First Quarter Birthday Club

Our friends who donate their birthdays to CCA are changing the world, one fundraiser at a time. Check out the birthday club first quarter funders and consider donating your birthday this year! Facebook makes it super easy and takes 0% in fees! 

Thank you to the following folks who were so generous to pay forward the celebration!

30 Stories 30 Faces 30 Years: Dr. Francis Smith

Ever since I attended my first CCA retreat in 1994, in Indianapolis, I have felt immediately like part of the family. Not only that, but I found quickly that I could be an adult mentor to the children and a peer mentor to adults affected by craniofacial differences, due to my own life experience with Treacher Collins syndrome. I also enjoy encouraging their parents and families. Over the years, I have become more up front as an advocate. I treasure the lifelong friendships I have made and opportunities to meet and encourage new families in the craniofacial community. The CCA Cher's Annual Family Retreat is the highlight of my year, and I look forward to many more years. Craniofacial advocacy (including involvement with CCA) has gone hand in hand with my burgeoning career in craniofacial scientific research.

Francis, Kate More and family visit the zoo

Francis lives in Aurora, Colorado who works as a craniofacial research doctor. Currently, he hopes his next research appointment will be at a European university. Most recently, he completed a post-doctoral fellowship at the University of Denver. He earned a doctorate in Oral and Craniofacial Sciences from the University of California San Francisco for his research on hypoxia induced craniofacial malformations in 2012. He holds a BSc from King’s College and a Master of Science in Biology from Purdue University. He enjoys playing piano and violin, drawing, reading, and collecting antiques, especially old medical devices and instruments. In 2018, Francis published his biography, Wonderfully Made with co-author Michele DuBroy. 

He says, “As a man with the rare craniofacial disorder, Treacher Collins syndrome, my life has been a struggle and an adventure. My childhood was rough with bullying in school and exclusion from childhood activities, but my adulthood has been an adventure because my TCS has given me untold opportunities to publicly speak out for awareness of craniofacial differences whilst being a craniofacial research scientist.”

Sunday, June 2, 2019

30 Stories, 30 Faces, 30 Years: Jerry Carchi

CCA has been one of the most inspiring organizations my family and I have ever been a part of. We found a place to call home, when it comes to being a part of group we can count on for advice and a place to pay it forward to a family just starting their journey into the craniofacial world. We have had so many great moments at the CCA Retreats, it is so hard to pick a favorite moment, but I can say that all those moments combine to become one great experience that is filled with pure love, understanding, kindness, and compassion. We see the future of the CCA family growing bigger and stronger as we continue to show families and individuals with facial differences that with love and support we can achieve anything no matter what the world throws at us.

                                                               -Jerry Carchi, CCA Dad

Jerry Carchi is the quintessential CCA Dad from Hohokus, New Jersey. He learned the art of fatherhood from his own great dad, who was always there, selfless, and reveled in seeing his children enjoy life. Jerry says his father “lived for us kids, and set the example of how to be with my child, Sydney.”

Sydney was born with Pfeiffer syndrome in 2009. Jerry and Virginia, her mom, hope to never let anything get in the way of Sydney doing and experiencing everything life has to offer. Jerry says, “CCA has helped Sydney embrace her differences and to never let barriers get in her way.”

The Annual Retreat and Educational symposium has had a positive effect on Jerry’s ability to be a father. Jerry and his wife, Virginia, learned about CCA and the retreat from Diana Sweeney at Children’s Hospital of Philadelphia. Jerry says the retreats have an overwhelming safe feeling. “We were not worried about who Sydney was hanging out with. There was no anticipation of what others were going to ask her. We, as a family, were free to be ourselves and feel a sense of normalcy.”

In addition to their annual retreat adventures, the Carchis love to seek out local adventures. They enjoy going to the park, art exhibitions, musical performances, hoping to show their daughter the world of ways she can authentically connect with people through the things you do, not the way you look.

Jerry has danced his way into our hearts here at CCA and at the Wyckoff YMCA where he works as Assistant Director. Jerry wanted to make a difference and help people find community through his unparalleled dance steps, kind heart, and loving spirit. With that said, it should be no surprise that Jerry teaches weekly Zumba classes at the YMCA and on Saturday morning at this year’s Annual Retreat and Educational Symposium, two communities he cares for deeply.

Many Thanks To Our Retreat Sponsors!

CCA is grateful for our sponsors, who generously provide funding for our Annual Retreat & Educational Symposium. Our sponsors are unique in that they not only support this annual, 29-year tradition, but also serve our craniofacial patients and families, through their products, support, and services. Without them and our loyal donors, it would not be possible to plan and present this event for our families every year.

Let’s thank all the sponsors for their financial contributions to the 2019 Annual Retreat and Educational Symposium in Scottsdale, Arizona.