By Leslie Schilling, Mother to Aubrie

Aubrie Adelaide Schilling was born on September 24, 2021. She was born with a head full of hair and was an adventurous girl from the beginning! I am her mama, Leslie, and her dad is Ryan. She adores her sister Zoey, who is 14 months older, and our two dogs, Callie and Cici. She has always been an overall happy girl with the best smile! She is a fearless, independent individual who LOVES climbing and laughing. She enjoys playing outside, dancing to music, and cuddling with her parents.  

Our genetic doctor at NCH recommended contacting the CdLS Foundation after Aubrie’s diagnosis appointment. Aubrie did not show any significant health concerns until her one-year pediatrician appointment, where she was not growing as anticipated and was never on the growth charts. With her small size and some physical facial features, our pediatrician decided to send her to Nationwide Children’s Hospital near us in Columbus, Ohio, for a range of bloodwork and tests. After months of testing and specialist appointments, we finally received the results at the end of December last year. At 15 months, our daughter Aubrie was diagnosed with Cornelia de Lange Syndrome. When we got the diagnosis from NCH, our lives turned upside down. This unexpected diagnosis prompted us to reassess and recalibrate our dreams and hopes for her. We grieved the life we envisioned for her but had to adjust previous expectations and find the positive. I left my career in March and became Aubrie’s biggest support and caregiver.

In these trying times, the CdLS Foundation emerged as a beacon of hope, guiding us through the intricate maze of this diagnosis.

Their Family Service Team was prompt in offering unwavering support and invaluable information. They introduced us to other families traversing on this similar journey. Their relentless assistance in many different aspects has been our compass in navigating Aubrie’s challenges.  

Aubrie has brought so much joy to our lives. She is strong, capable, and so charming. Aubrie has had more doctor appointments/procedures in such a short amount of time, yet she still has an open, trusting heart. She has taught me to understand what is most important in life. She has shown everyone around her to enjoy every day and celebrate EVERY win, whether big or small. She is intelligent and wonderful. Even if her abilities are not ‘average’ for her age, she will learn at her own pace, and we are proud of every little win- she is unapologetically our sweet Aubrie!  

She has taught our family many essential life lessons these last ten months. She has demonstrated perseverance and strength. She has taught us to slow down and remember the most important things in life. Our entire village has been vital to us since diagnosis. My father, Don Radkoski, has been vital to me and Aubrie since diagnosis. He has been very involved in attending appointments, doing extensive research, and consistently showing up physically and emotionally for me, Aubrie, Zoey, and Ryan. I asked him what Aubrie has taught us, and he responded, “Aubrie has taught us to celebrate small wins and live in the moment with her. To stop and be thankful for a new word, for that first step, for a good doctors’ report, for a hungry appetite, and a big happy smile.” She has been such a fantastic reminder to all of us about what TRULY matters in this life. I am so incredibly honored to be her mother.  

The idea for “Aubrie’s Army” Fundraiser started with my niece Harper (9) and nephew Colter (7), who had a Lemonade Stand in the spring. After a successful day, they donated half of their earnings to a nonprofit and chose the CdLS Foundation. Neither one fully understood Aubrie’s diagnosis, but they knew they wanted to give their hard-earned money to their baby cousin. My family realized that this Foundation had helped us tremendously, so it prompted me to start looking into organizing a larger-scale event to raise money. As Aubrie’s mother, I organized this event to support and give back to the CdLS Foundation. They have been fantastic over the last ten months with Aubrie and our family. The CdLS Foundation stands unmatched in its dedication to Cornelia de Lange Syndrome. It is a guiding star for countless families like ours, ensuring the best possible care and spearheading groundbreaking research. I created “Aubrie’s Army” Fundraiser for the CdLS Foundation and contacted close friends and family for support.  

On September 23, 2023, we hosted the first annual fundraising event for Aubrie’s Army. This gathering aimed to amplify awareness about CdLS and generate funds to empower the CdLS Foundation in its mission of providing crucial services and resources. We organized a silent auction, raffle, and fun run/walk to raise money. Our parents and siblings provided food and drinks. There were kids’ activities, awareness t-shirts, bracelets, new design stickers, and more!! We had an extremely successful event and raised over $14,000 and counting! I cannot thank our village enough for showing up like they did in honor of Aubrie. We have even more ideas for next year’s event and hope it continues growing! 

I want the world to know that Aubrie is capable of big things – her CdLS diagnosis does not restrict her from being the BEST version of herself. Life can give us unexpected challenges, but that does not define us. We all need to learn to judge less and be kind. She is an amazing, funny, strong toddler that I continue to learn from daily!  

Let’s champion together and celebrate the loving spirit of sweet Aubrie and all the individuals with CdLS!