A Catwalk for Crohn’s
Stephanie Nelson couldn’t have been prouder when her seven-year-old, Addie—a victim of Crohn’s Disease, took the spotlight (in Oscar de la Renta!) at the CCFA’s Women of Distinction Luncheon
For 19 years and running, the New York Chapter of the Crohn’s and Colitis Foundation of America (CCFA) has been hosting an annual Women of Distinction Luncheon to help those with the autoimmune disorder that affects gastrointestinal health. This year, the Waldorf Astoria event got an additional boost of glamour, thanks to the generosity of Bergdorf Goodman, Trish McEvoy, and Oscar de la Renta, whose gorgeous new line was sported in a runway show to remember. Many wonderful women (and gowns, of course) were featured, but the “Rising Star Award” went to seven-year-old Addie Nelson, who was diagnosed with Crohn’s at age five. Elizabeth Street spoke to Addie’s mother, Stephanie Nelson, who’s proud of her daughter not only for her courageous runway performance, but also for the way she lives her life.
What have been Addie’s biggest hurdles in adjusting to life with Crohn’s disease?
Addie was five-years-old when she was initially diagnosed. At such a young age, it was hard for her to be in any situation where she deemed herself “different” from her peers. She didn’t like having to eat food that was different from her friends’ at lunchtime and she didn’t like leaving school early to squeeze in a blood test or a visit to the doctor. Addie has had to grow up faster than most of her peers, but because of her experiences, I think she’s learned that it’s okay to be different. Now she’s confident in sharing her story, and talking openly about her life with Crohn’s.
How has the experience affected your family?
I think it has affected us in ways we don’t even know yet. But from the beginning, the experience helped us to “stop and smell the roses,” so to speak, and to appreciate each day as a gift. That’s an easy thing to forget in a fast-paced city like New York.
How has the Crohn's and Colitis Foundation helped you and your family?
CCFA has been invaluable to us. The organization has provided us with medical resources, doctor contacts, and also practical materials like the informative pamphlets we give to Addie’s teachers every school year. But most importantly, the organization’s NYC office has been a huge comfort. Addie is happy to know she is not alone, and we are relieved to be supported in giving her what she needs.
What was the most heartwarming moment of the Women of Distinction Luncheon?
It was such a wonderful day for Addie. She spoke in front of more than 830 guests, delivering a speech she wrote on her own. She had such amazing poise and a big smile on her face. I don’t know many adults, let alone children, who can speak with such ease in front of a huge audience. About an hour after her speech, she came out as the first flower girl in the Oscar de la Renta fashion show and the audience stood for her. She was beaming and it was truly a magical moment for everyone.
Addie sounds incredibly brave. What do you admire most about your daughter?
Addie is my hero in every sense of the word. She amazes me everyday. But if I had to pick what I admire most about my daughter, it would be her courage. She has lived a lot of life in seven years and has faced every situation head-on, with a spirit that’s incredibly brave.
What advice would you give to moms with children facing disorders?
On a practical level, I would say to reach out to family and friends for support and medical advice. We were surprised by all the medical connections and help we received. On an emotional level, my advice would be to have hope. That is what gets us through every stomachache, every test Addie goes through. We have hope that they will find a cure for Crohn’s Disease and hope that, in the meantime, Addie’s life will be as healthy and happy as possible.
Photos by: Rob Rich/SocialAllure.com / Matt Borkowski