Sunday, January 21, 2018

#NewsDayTuesday: Illinois Boy Survives and Thrives After Life-Saving Surgery

Photo Credit: 23WIFR 

An inspiring story out of Byron, Illinois about a 1 year old baby born with craniosynostosis. Symptoms did not start until a year into the boy's life.  The doctors in Illinois quickly diagnosed him and performed the life-saving surgery to relieve the pressure in the child's head and allow the brain to continue to grow. Read and watch the video about this brave little guy at the 23WIFR website. 

Learn more about the sign, symptoms, and treatment for craniosynostosis on the Children's Craniofacial Association website.

Wednesday, January 17, 2018

Introducing J.Jaye Van Sickel, Executive Assistant!

J. Jaye has a passion for helping educate the public about craniofacial differences and seeks to help facilitate changing peoples’ attitudes from that of fear, indifference, and bullying to understanding, compassion, social acceptance and friendship. J. Jaye was born in Canada, grew up in Seattle, and received her B.A. in Fine Art from Abilene Christian University in Abilene, TX. She enjoys baking 3D cakes. She also helps her talented husband, Jason, who is a filmmaker, with wardrobe design and art direction. Together, they have two amazingly smart and talented CCA kids, Sophia, and Redding.

Patient Experience Project in Saratoga Springs, NY Hosts "Rare Disease Day at the Movies"

The Patient Experience Project (PEP), a patient-centered communications agency, will host its third annual “Rare Disease Day at the Movies” on February 28, 2018, in Saratoga Springs, New York. The event raises awareness and funds for people living with rare conditions. This year, inspired by Megan Cronin and her family, PEP will feature a special screening of the movie Wonder, based on R.J. Palacio’s book of the same name. Additionally, hundreds of students in several school districts in New York’s Capital Region have participated in a poster contest for the event, depicting the themes of kindness and acceptance in their artwork. All proceeds will benefit the Children’s Craniofacial Association (CCA).

Attn: Issaquah, WA Residents: Boys Basketball Game Raises Awareness and Funds on Jan. 19th

Washington State residents that live in the Issaquah area. Please join the Issaquah Eagles as they take on the Skyline High School basketball team on Friday, January 19th. Take in the game and help the students raise funds for Children's Craniofacial Association at halftime. The school will host a "miracle minute" during halftime featuring stories about and by people affected by craniofacial conditions. Go to the game to participate and raise funds for CCA. Have a great time and do good at the same time. 

Thank you Issaquah High School for taking a "minute" for us!

Personal Essay: On The Outside

By Jenna Ottow

Jenna Ottow was born with Apert Syndrome, a craniofacial birth defect. She lives in Milwaukee, Wisconsin.  She works in the health insurance field coordinating care and advocating for patients’ needs. She  enjoys hiking with her dog, watching the Green Bay Packers, and reading.  Jenna also enjoys socializing, a good glass of white wine, and any reason to find the silver lining.  

Having a craniofacial difference is hard.  I was born with Apert Syndrome which means I was born with most of the bones in my skull, hands, and feet fused together. These bones are still fused today. A craniofacial difference is on the outside, and it’s obvious. All the time.  Sure it can literally  be masked with sunglasses, scarves, surgeries, or hats. These masks are useful to dodge the second looks, gawks, or whispers, but after those layers come off, the wounds, scars, wide set face (for me) are still there, staring back. Apert Syndrome has followed me my entire life. I am almost always the only  person in the room with a physical difference. I stick out like a sore thumb.  I try not to think about it.  It is confusing, lonely, and unsettling.

I’ve learned from a young age that the stares, whispers, and gawks won’t go away.  Ever.  I realized that in order to survive, to make this life of mine habitable, I needed to change my perspective.  For one of my college scholarships, I wrote an essay on a Nathaniel Hawthorne quotation, "Life is full of marbles and mud."  It was hanging on the wall in the classroom where I was supposed to master the art of cooking.  In the essay, I explained that in order to get through the mud, the focus had to be on the marbles.  Always.  Celebrate the marbles in first class style, own the marbles, that way, when mud rears its ugly head, marbles will always have a place.  A place to look forward to.  That’s all.  A lifetime of experience has taught me to barter the marbles to avoid the mud.

A few years ago after a very filling holiday visiting family, I was boarding an airplane with my parents.  My Dad prefers to sit in the exit row.  At 6’3” his legs get squished in almost all modes of transportation.  The exit row on a 747 has more legroom as it serves as the emergency exit, making a 3 hour flight a little more bearable.  That is where we sat on this flight.  My Dad and I on the ends, my Mom in the middle.  Passengers were getting settled, compartments were opening and closing and the telepathic pleas from the parents to overtired children begging for a “tear-and-drama-free” flight hung in the air. Turns out the children would not be providing the tears that evening.  The three of us had just listened to and agreed with the rehearsed statement from the flight attendant explaining the responsibility that comes with sitting in the exit row.  I believe you have to at least be 15 years old to sit in this row, At the time, I was in my mid twenties.  Phones were getting turned off, and smaller carry ons were being shoved under seats. There was a silence, yet we weren’t moving.  A different flight attendant approached our seats with haste.

She leaned over my seat and said to my parents, "She will have to move.  We’re sorry for any inconvenience, but she can’t be here."

Apparently, a judgement was being made based on my physical appearance that I could not handle the duty of sitting in the exit row, despite my previous confirmations.   My parents, not really sure what their role was in this, looked at me, with my mouth agape as I looked at the attendant.

"You’re talking about me?" I asked her.  The attendant nodded, still looking at my parents. "First of all, I’m right here.  You can look at me, not them.  Secondly, talking around me as if I can’t hear you is unnecessary, and frankly insulting."  I felt disrespected because this flight attendant didn’t think to approach me first.  I was angry, and embarrassed because of the small scene that I had the starring role in.  Furthermore, I was literally paying for this insulting behavior.  I wasn’t even given a chance to defend myself.  I was stunned.  Not wanting to delay the flight and too tired to protest any more, I moved.

 The flight attendant mumbled out a canned apology and showed me my new seat.  Thankfully I had the row to myself, I cried silently to myself almost the entire flight.  I wrote a letter of complaint to the airline, narrating the incident.  A few weeks later the response that came back indicated that the flight attendants had done nothing wrong.    I’m not going to say the flight attendants were wrong in their judgment, it didn’t actually occur to me until right now what would have happened if the airplane had run into trouble.  Again, it was more about how the situation was handled much more than why it happened.  I was not surprised, however to learn that shortly after this incident, the airline went out of business.  Karma.

After this incident, I did a lot of research on the rights of a traveler with a disability.  Thanks to the government, air travel is amazingly accommodating.  Now, when I travel, I utilize the services available, especially when I’m alone. It's less nerve wracking to travel with the government on your side.  One of the biggest, and really the only accommodations that I’m qualified for is being able to board early.  I have limited range of motion because of some residual bone fusion that surgeries never resolved, I can’t raise my arms above my head, coupled with being 5’1” means lifting a carry-on into the overhead compartment is not happening any time soon.  Passengers boarding an aircraft can be chaotic, and my needs for assistance can be inconvenient in the midst of all the bustle.  By boarding early, I’m able to get assistance without being an inconvenience to my fellow flyers, and more importantly, avoid the sea of stares as I find my chosen seat - away from the exit row.

Life is full of marbles and mud, or accommodations and emergency exit rows. Sometimes, using the marbles to avoid the mud makes all the difference.