Friday, October 11, 2019

30 Stories 30 Faces 30 Years: Brittany Stevens






"CCA means love and acceptance for everyone! One of our favorite CCA memories is listening to David Roche speak about "moments of grace,” and how his grandmother's influence, words and actions, taught him to stand tall...look people in their face and let them see your beautiful face! And, he talked about meeting the love of his life, Marlena."

                        -Harlena on behalf of Brittany Stevens, CCA Adult

Brittany Stevens loves to dance, give big hugs, tickle, and don

costume jewelry. Her devoted mother, Harlena, says, “Miss Brittany is pure love, light, and sunshine for everyone that she meets!” She attended Philadelphia Public Schools, via the Life Skills Program. The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, she blossomed into the unique woman that she is today. Brittany works at the PATH Workshop (People Acting To Help), participates in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and goes away to adult camp, Carousel Connections Camp, one to two weeks every summer where she continues to learn work and life skills.

Though the doctors did not think that she would talk, walk, run, or
even know she was in the world, Britany defied all those odds. She is non-verbal, but uses basic sign languae to communicate. Her younger brother, Quinn, and mother, know he signs and understand her well. Sometimes her brother understands her a bit better than even her own mother! This is a testament to their strong sibling bond.

At age five, Brittany was diagnosed with Nager syndrome. During this time, Harlena, her mother, was divorced, struggling to stay employed, maintain sanity, and provide for Brittany and Quinn. Thankfully, this strong family lived in Philadelphia near Children’s Hospital of Philadelphia (CHOP) where Brittany was a patient. While at CHOP they were connected with the National Organization for Rare Diseases (NORD), Children’s Craniofacial Association (CCA), and the Foundation for Nager and Miller Syndromes (FNMS). CCA and FNMS provided Helena with answers to questions they had about Brittany’s syndrome. All of these organizations offered avenues for advocacy, networking, and a community of acceptance of new-found friends that would become family. 


In the end, with all that this family was given, their goal became clear: give back  to CCA by helping new families and individuals embrace the challenges they face, and learn how to live their best life!





Wednesday, October 9, 2019

30 Faces 30 Stories 30 Years: Kate McAllister





CCA, in words, is... facts, connection, support, understanding, friends, and family. Our CCA journey started with getting facts on Kate and her syndrome. Without the financial help we initially received, Kate may not have had the same outcome medically. CCA worked on connecting us with others with Kate’s condition. We got from them family support and understanding from people who truly get what you go through and the path you walk. The friends we made through CCA and the Annual Family Retreats are now a part of our family! Thank you CCA for being there every step of the way!

                                  -Stacy McAllister, Kate McAllister’s Mother





Kate lives with her Mom, Stacy, Dad, Alan, and 11-year-old brother, Leland in Saint Paul Park, Minnesota. Her eldest brother, Dakota, 24, is a member of the Minnesota Army National Guard. This avid baker, girly-girl fashionista, dancer and US traveler is a fifth grader at Pullman Elementary School. Next year, she will join her brother at Olman Middle School.
Kate and CCA Adult and friend,
Sabrina Seitz


Kate connects with her CCA friends around the country through her culinary skills. Mom, Stacy, is encouraging because she knows baking brings self-esteem and a smile to Kate’s face. Mom feels, though this hobby is at times expensive, it is so very worth it for Kate. Mother and daughter look up recipe ideas on Pinterest, gather ingredients, and whip up batches of baked goods.
While cookies and brownies are her favorites to make, she has some extra special ideas with Halloween, Thanksgiving, and Christmas just around the corner.

Connection is not only born in the kitchen, but also on the family
Kate and CCA Friend, Avery Cooper
room couch where Kate texts with her CCA pals, sharing her highs and lows with people who truly “get it” when it comes to growing up with a facial difference. Whether among her friends, in the classroom, or when conversing with her doctors, Kate always pushes for more -- more information, more fun, and more brownie recipes! She truly is a seeker in all facets of her life. Mom says, “she is very much in charge and wants to know all the information people are willing to give her.”


Stacy shares that raising Kate made her more of a helicopter parent, one that is now far more overprotective of her youngest child. Mom is always aware of where Kate is, who she is with, and tends to worry more when Kate is out on her own.

“I am amazed at the amount of people in our world that can’t see past the outside of her to the amazing, beautiful human she is. She is beautiful in every way that is important. Many who take the time to know her, love her!!”

Stacy’s concerns especially extend to the impending transition to middle school, where Kate will encounter kids from the six other elementary schools in the district. “All those new kids -- It’s overwhelming,” Stacy says.



Right now, though, the McAllister’s will encourage Kate to stay in the moment, and enjoy this year through baking, attending monster truck rallies, camping, and bonfires. Time together in nature is especially restorative for this family, as they want to make the most of the great outdoors before the freezing cold, winter weather descends on the midwest. In the months before Fall 2020, when Kate goes to middle school, the McAllister’s know their CCA network will be there to lift them up.

Stacy sums up the relationships she has with other CCA families by stating their family is, “blessed with the most amazing women and men that have been at my side, or on the other side of the phone. They walked into our lives, giving us true, unconditional friendship and understanding that those who do not live this life will never understand.”






Sunday, October 6, 2019

#WonderWednesday: Angie and Marco Visit Armstrong School For Fourth Time



Angelica and Marco Garcia spoke to 120 eager students at Neil Armonstrong Academy. This was their fourth visit to the school in as many years to talk to the students about what life is like living with a facial difference. The students read the book "Wonder" and Marco and Angelica's assembly was part of one-of-a-kind learning experience where R.J. Palacio's book was brought to life through their presence and words at the school. Thank you Angie and Marco for your continued service to CCA and the students of Utah. If you are interested in having an adult or child with a facial difference   come to your school while reading "Wonder," please contact Khadija Moten, khadija.ccakids@gmail.com or fill out this form. If you are an adult or child with a facial difference and want to share your story, you should go to our speaker's bureau website.  


Here is what Angie had to say about the experience at Neil Armstrong Academy: 
It was so WONDERful to see the new batch of 6th graders this week! It was our 4th time coming and it just gets better every time ☺️ We love the innocent honesty of children and wish more adults could learn from that. We had encouraged them to ask us ANY question their hearts desire. One child asked if we were going to have more children and a few classmates shushed them, but we thanked him for asking that question and I answered that hopefully through adoption "yes."  And R.J. will always be our first child and his passing didn’t stop us from the idea of giving more dear children a stable loving home and family. We also emphasized that we are not limited to adopting children with Apert syndrome. I’ve noticed that with adults too, they assume that we will just focus on adopting kids with Apert syndrome. If the time comes that we are in a place financially and legally to adopt, if there’s a child that wants us to adopt them regardless of our looks and there is equal love and a positive dynamic present, then we are so going to adopt them. #heartsforRJ #wonder #choosekind #cam2019 #teachthekids