Celebrate Your Champions 2013 Yearbook

Dear Friends, Who is your Cornelia de Lange Syndrome (CdLS) Champion? Is it a friend, relative, professional, or maybe the person in your life with Cd...
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Dear Friends, Who is your Cornelia de Lange Syndrome (CdLS) Champion? Is it a friend, relative, professional, or maybe the person in your life with CdLS? Did this person provide you comfort, support or inspiration at a meaningful time? The CdLS Foundation recognizes the importance of acknowledging your CdLS Champions and provides an opportunity to honor them publicly.

Celebrate Your Champions 2013 Yearbook

The Celebrate Your Champions Yearbook is a collection of individuals who have been recognized for their love, support and devotion to the CdLS community. Friends and family members have acknowledged their CdLS Champions through three levels of giving: trophy, medallion and ribbon. This yearbook highlights these champions and their contributions to the CdLS community. Enjoy! Marie Concklin-Malloy Executive Director, CdLS Foundation

Trophy Champions Eileen Ahearn Eileen is an excellent and loving parent of Daniel Kliewer (CdLS). She is a strong supporter and very active member within the CdLS Foundation. She is a long time Foundation board member and the current vice president. (We are biased, she is our daughter-inlaw.) – Hazel & John Kliewer Elise Ahearn My sister, Elise, is my champion. She has been a constant source of support over the years to my son with CdLS and our family. She is always checking in to see how Daniel is doing and how we are doing, she was always the emergency contact so that we could take a vacation, and she is a great sounding board with regard to important decisions about Daniel’s care. In addition, she has worked to increase awareness about Cornelia de Lange Syndrome and has supported the Foundation financially. I am not sure how we could have raised Daniel without her ongoing support. She is a gem. – Eileen Ahearn Shelby Baird Shelby is my champion. She faces insurmountable obstacles on a daily basis yet looks pretty in pink in “God’s Life.” She is innocent as the day is long, wears her heart on her sleeve and is the definition of empathy even though she cannot understand what it means. She doesn’t understand why she does the things she does, yet looks pretty in pink in “God’s Life.” She doesn’t understand why anxiety grips her so, yet looks pretty in pink in “God’s Life.” She doesn’t know why she scratches her hand or arm until it bleeds; yet she looks pretty in “God’s Life.” She doesn’t understand the world around her, yet her world, God’s world, is pretty in pink. She is our window into God’s world. She touches the lives of everyone she meets and reminds us that everyone has a purpose in life. – David Baird

Shelby Baird When I think of who my champion is, I immediately think of my beautiful daughter Shelby. She is my CdLS hero; there is no doubt about it. She embodies a special quality that is so unique and characteristic to who she is. She is light, love and sunshine. She is curious, naïve and innocent. She is friendly, social and unaware. In describing Shelby, I could literally fill an entire page of adjectives. Yet, with all of these wonderful words that describe who she is, she is also complicated and unpredictable - but that’s the beauty of Shelby. Shelby turned 20 years old on March 28, 2013. In those 20 years as I reflect, it brings back so many memories. She is my masterpiece. Through years of loving, nurturing, educating and learning about Shelby, I know this for sure: it’s been a journey. Yes, we’ve had our ups and downs, but we’ve grown, we’ve learned, and we have conquered. God’s Life by Shelby Baird I look pretty with hot pink in the world and God’s life. My day is kind of flower rose in the sunset yellow up in the sky. I am the princess with lots of sparkles with my prince charming wishes. I can make a list about the good things in my light pink room with flowers on my wall.- Age 18, November 2011 – Tammy Baird

Margaret & Richard Bergstrom During Joey’s brief life, Richard and Margaret Bergstrom (Grandpa & Grandma) were always so supportive and loving each and every day! Thank you so much! – Rich & Dianne Haaland

Kierstyn Crosby Kierstyn is a four-year-old little girl who has two big brothers ages eight and six. She is in school and has been in a public school program since age two. She can talk and some of her speech is jabbering and some is correct. She is a very energetic, friendly child. She loves to play outside and in the pool or beach. Her favorite movie is Shrek and she loves her family. They are her favorite people! – Mindy Hollaway

Cheryl Davis Super champion Mom! – Cynthia Bernard

Brian Drach You are a CdLS Champion! – Alice Hultmann

Barbara Edwards Barbara is a CdLS Foundation Champion because she has played a huge part in Jaclyn’s life from 2005 to 2013. Mrs. Edwards was Jaclyn’s homebound teacher. She would come in twice a week for two hour sessions with Jaclyn and helped her reach many goals over their school time together. The gentleness, caring, comforting and supporting way she had with Jaclyn was overwhelming. Jaclyn learned colors, how to spell her name, make choices, and accomplished many other goals. She is a blessed soul who became part of the Fielder family. June 2013 was Jaclyn’s last month of her school life, and Mrs. Edwards will be sorely missed as we close the school chapter in Jaclyn’s life. God blessed us with a wonderful teacher, out of many over the years, but Mrs. Edwards was with Jaclyn the longest. – Luanna & William Fielder Jaclyn Sue Fielder She is truly a CdLS Champion because she has this syndrome. She has to live every day with the life threatening problems that are associated with this syndrome and does not even know why. She has learned to accomplish little things like making a choice, swallowing, walking, communicating, etc. Jaclyn is truly an inspiration to all those that come into her life because she shows that being strong comes from within. As difficult as it is at times to be able to care for Jaclyn, she truly is a blessing in our family. She conveys to us, without even knowing, to slow down, be kind, show love and have patience. Jaclyn is our CdLS Foundation Champion. God has blessed her and our family. – Luanna & William Fielder

Manuel J. Garcia Manny is and will always be the love of my life. Manny is not aware of his surroundings but anyone around him is aware that Manny is a happy boy because he is always smiling and laughing. Even though he has gone through a lot, he is still smiling and laughing. Thank you Manny for being my champion. Love you, Mami. – Liana Davila

Amy Haaland What a fantastic younger sister to Joey! Amy has always been the most tender and loving support possible! – Rich & Dianne Haaland

Monica Haaland Monica has been a support for Richie Haaland in his activities with the Foundation. Also Monica coordinates a team of student volunteers from Our Lady of Mercy High School for the “One Love One Heart” fundraising race in Decatur, Georgia. – Rich & Dianne Haaland

Richie Haaland Richard (Richie) Haaland is certainly the best big brother anyone could imagine. Now many years later, he continues Joey’s legacy with his active participation with the CdLS Foundation. – Rich & Dianne Haaland

Mark Kliewer Mark is an excellent and loving parent of Daniel Kliewer (CdLS). He is an active and strong supporter of the CdLS Foundation and a long time member of the Foundation’s medical and science staff. (We are biased, of course, because he is our son.) – Hazel & John Kliewer David Leonard You are a CdLS Champion! – Lisa & Stephen Leonard

Susan Leone When I had my son, Manny, with CdLS, I thought my life was doomed, but when I met Susan, parent to Frankie with CdLS, a few weeks later, I knew that my life was going to be fine. Because of Susan, I survived the shock of the diagnosis and the struggles of the first few years. Susan’s optimism made me realized that Manny was a blessing in disguise and that I was going to be fine. And today, thirteen years and many struggles and heartbreaks later, I can say that I am fine. Thank you Susan for being my champion. You are the best! – Liana Davila Noah Macy When our son Noah Macy called to say that there were arm anomalies on their second baby’s ultra sound, we wanted to believe it was not true. But Noah had seen them clearly and he began to prepare for the baby’s birth. He was able to diagnose the anomalies as Cornelia de Lange Syndrome, so when the baby boy was born, the doctor agreed he was right - this little one did have all the signs of this rare condition. We watched Noah tend to his family with great care and advocate for his son throughout the long hospital stay. Our admiration for this strong, kind and gentle father is immense. He takes great joy in playing with both of his sons and giving them all the opportunities possible. He gives his wife support and takes part in fundraisers and community events for CdLS. We are so proud of Noah for his caring concern for Tyler and all children. – Barbara & Timothy Macy

Tyler Macy Tyler Macy, a poster child for CdLS, is a natural champion. His daddy diagnosed his CdLS before he was born and the doctor verified it immediately upon birth. Since then, Tyler has astounded everyone with his tenacity and willingness to use the limited resources he has to enjoy life. He is such a treasure. Our entire family has benefited from knowing him. As he turns five years old, we celebrate his precious life. He has been through lots of treatments and trials, yet demonstrates an amazing resilience! You should see him empty a toy box with his feet! He gets around enthusiastically in, what I call, a gallop. He has a great sense of humor. I love spinning him around and hearing his laugh. We are very thankful for this sweet little boy and consider him a champion! – Barbara & Timothy Macy Patricia Martin Patricia is Mamaw to Jaclyn Fielder. Since 2005, when Jaclyn’s mom went back to work, Mamaw stepped in and started watching Jaclyn four days a week. By the grace of God, Mamaw learned all the medical needs and communication needs that Jaclyn requires. Mamaw helped Jaclyn attend school two days a week along with her music classes. They have formed a special bond. There are days when Jaclyn doesn’t want her to go home. Mamaw is truly a CdLS Foundation Champion as she unconditionally loves and cares for her granddaughter and is trusted to be able to care for her medical needs. She is a blessing to Jaclyn’s mom and dad in that they can feel comforted that when Mamaw is on the job, there is nothing to worry about. – Luanna & William Fielder

Elisha Massey You are a CdLS Champion! – Joan Washington

Payton McDonald You are a CdLS Champion! – Lorraine & Dennis Koss

Suzanne Musial My champion is my daughter Suzanne Musial. She is Ella Grace’s mom and #1 caregiver. She is the reason that Ella turned five on April 23rd. She has so much strength and a positive attitude. She has educated herself about every condition that Ella has. Many doctors think she has a medical background. She always puts Ella and her needs first. She is never afraid to question a treatment to make sure Ella is safe and getting the best care. Suzanne never complains when her needs or desires have to be put in the background. Suzanne keeps our family and friends connected with Ella’s Caring Bridge webpage and her blog – always with her sense of humor intact. She amazes us with her strength and dedication. She fights for Ella with insurance companies, medicare, and even health professionals to enable Ella to have what she needs and gets the best care! She also co-chairs an annual fundraiser in September and designed the new logo for awareness day in May. To say that I am proud of her is an understatement. She continues to amaze me and comfort me. She is truly a champion for Ella Grace and for CdLS! – Peggy & Lonnie Harrington Alyssa Nicole Pletl Alyssa lives every day to the fullest. She loves going to her day program with all her friends. She greets everyone with a hand shake and a warm welcoming smile whether she knows them or not – never judging anyone!! She loves to go to all her brothers’ football and lacrosse games- she is their biggest fan. She is a great big sister and godmother to her goddaughter Haylee Rose. Alyssa is our world and we could never imagine a life without her!!! – Donna Pletl Maya Pomfret We have followed Maya’s progress through our son’s encounters with her and her family. Last December, we finally had the opportunity to meet her and her family at the “One Love One Heart” race. We thought that was special but not as much as when Maya ran up to Rich, motioned to be picked up and then snuggled against his chest! This was a warm memory we will always cherish! – Rich & Dianne Haaland

Francesca Rissland Francesca Castellana Rissland, what a winner! All four of her children get the same love and attention. Her devotion and energy are endless. She always has time for other people’s needs and seldom says no. I am so blessed to call her my daughter and best friend. – Michael Castellana

Camden Robbins We have watched him grow into a smart, loving, and happy boy. Camden is an inspiration to his family and friends! We love you boo boo! – Debbie & Dennis Lark, Teri Robbins

Christie Rouse My daughter, Christie Pataky Rouse, is an inspiration in my life. Her third child, my grandson, Payson Rouse, was diagnosed with CdLS and a number of other chronic conditions nearly two years ago. As devastating as that is, Christie never lost focus on the blessing that God bestowed upon us in Payson. Through all of the medical procedures, doctor visits, therapies and litany of unfortunate diagnoses, Christie continues to see the positives in Payson and her life. Raising a child with CdLS in addition to two other children is a tremendous undertaking of time, effort and patience for which I could never do. In one respect I’m sadden that Christie will never experience a carefree adult life, yet I find comfort in the fact that she has found an inner peace that most will never experience. Christie’s strength, tenacity and overwhelming love for her children has taught me to appreciate the important things in life. I am very proud of my daughter and she is my CdLS Champion. – Richard J. Pataky

Phoebe Taylor Phoebe is 10 years old and she will be entering fifth grade in the fall. She has two older brothers Bryn (13) and Kellan (12) and a cat named Baxter. Phoebe was diagnosed with CdLS when she was five months old and has continually received occupational and speech therapies. She currently is enjoying leaving notes around here and there for us to read and her speech has blossomed to the point that she is rarely quiet around the house. Phoebe’s favorite activity is swimming. Phoebe swims at least once a week and has competed in a few swim meets. The last meet she placed first in the breast stroke and the backstroke. Now with summer here, it will be hard to get her out of the water. No wonder her favorite character is still Nemo. Phoebe has some wonderful personality traits. She is a hard worker. She works diligently on her school work. She is reading at a second grade level and is doing basic addition and subtraction in math. She is also willing to help with chores around the house. She is very organized and schedule orientated. She keeps me and the family in-line with our schedules of the day, week and month. She also likes to know the weather every day. One of the personality traits I love the most, is Phoebe’s sense of humor. She makes us laugh. The challenges she faces makes her achievements shine a little brighter. – Susanne & Darren Taylor Bradley Winter You are a CdLS Champion! – Elaine Reed

Additional Trophy Champions Alexandra Boteler Recognized by: Linda & Dawn Boteler Gipsy Bolling Recognized by: Mary and Harold Bolling Angela Latham Recognized by: Lynda & Alex Latham Marilyn Manthey Recognized by: Margie & Brian Manthey Cardinal Gibbons Council #2521 (In honor of Lindsey Rekoski) Recognized by: John Marken Sofia Teixeira Recognized by: Patricia Rhodes

Teagan Young Teagan is my 14-month-old granddaughter. She is almost 10 pounds and struggles to eat, so she has a feeding tube. Developmentally, she is several months behind, but progressing. Her mother calls her a cuddle bug for good reason. Although she is small and has her challenges she is really sweet and her smile just melt’s this grandfather’s heart. – Paul Fike

Grace Truong Recognized by: Sounida Douangpraseuth & Phu Truong Sarah Spaulding Recognized by: Wanda Turcotte Stephanie Valentino Recognized by: Nancy Valentino Jennifer Wenger Recognized by: Debra & Robert Wenger

Medallion Champions

Ribbon Champions

Jaxon Anderson Recognized by: Joyce Anderson

Jennifer Goellner Recognized by: Kathleen & Frederick Goellner

Beth Patitucci Recognized by: Lynnette Miller

Dawn Agueros Recognized by Fran Rissland

Delaney Green Recognized by Lori & John Green

Sally Jo Race Recognized by: Kathleen Pollard

Colin Bell Recognized by: Stephanie Johnson

Liddy Horsey Recognized by: Karen Marie Manning Thomas Horsey

Cristian J. Reza Recognized by: Julissa & Jesus Reza

Alexandra Boteler Recognized by: Ruth DeBelo

Samantha Kirshner Recognized by: Tina Leeds

Brendan Rees Recognized by: Ann Rees

Camden Robbins Recognized by: Teri Robbins

Robert Carter Recognized by: Cheryl & James Carter

Ally Larson Recognized by: Linda Starr

Schaab Family Recognized by: Lynnette Miller

Joseph Cattabiani Recognized by: Nancy L. Cattabiani

Eric Loftus Recognized by: Karen Szukalski

Siena Renteria Recognized by: Stephanie Barber-Renteria & Tupakk Renteria

Jersie Schreder Recognized by: Jackie Schreder

Jordan Chavez Recognized by: Elba Marroquin

Ella Grace Musial Recognized by: Peggy & Lonnie Harrington

Josie Schreder Recognized by: Jackie Schreder

Mary Dunkle (Donor)

Paige C. Olson Recognized by: Jean & Edward Connon

Jimmy Bugbee Recognized by: Melissa & Al Bugbee Lorenzo Calvillo Recognized by: Maria Calvillo Corinne Canning Recognized by: Maria Paslick Matthew Chevrette Recognized by: Fran & Marv Silverman Patricia & Norman Chevrette

Jill Huntley Recognized by: Mary & Lee Langolf Abi Jensen Recognized by: Ann Troolines Kay & Tom Kleeman Recognized by: Kim & David Mitchell Joan Kuehn Recognized by: Jen & Dennis Ahern

Loren Cunningham Recognized by: Ronald McKinley

Kaitlyn Kuepferle Recognized by: David Eberle

Delaney DeMaria Recognized by: John & Virginia DeMaria

Maegan Lowrey Recognized by: Bolling & Bill Lowrey

Devereux Pride Center Recognized by: Lynnette Miller

Mabel Olivarez Recognized by: Jan & Jim Abbott

Edie Thompson Recognized by: Jennie & Dennis Ahern Margaret Walters Recognized by: Lynnette Miller

Dottie L. Fletcher Recognized by: Susan & Terrance Fletcher Logan Fowler Recognized by: Anonymous Dylan Fuller Recognized by: Gail & William Baxley Makayla Geary Recognized by: Mary Geary

Ashley Palermo Recognized by: Alisha Palermo Colin Postell Recognized by: Joan Postell Samuel Postell Recognized by: Joan Postell

Maria D. Sanchez Recognized by: Juanita & Guillermo Sanchez Eric Solomonson Recognized by: Gordon Gnasdoskey Laura Stalemark Recognized by: Fran Rissland Joy Zerbarini Recognized by: Jean & James Crowley

Recognize your CdLS Champion in 2014. For more information, contact Gail Speers [email protected] 800.753.2357 or celebrate your champion online at www.CdLSusa.org/Champions