A Chance Encounter With a Stranger Made a Lasting Impact

When my daughter Cammy was 5, she participated in a clinical trial at Boston Children’s Hospital that was supported by the International Rett Syndrome Foundation (IRSF). We traveled from our home in Illinois to Boston and back multiple times in 2014 and 2015, and met many incredible people along the journey. One encounter turned out to be one of the most impactful meetings of my life.

During our travels, strangers were often interested in Cammy and approached us to say hi and learn about her. We handed out many of Cammy’s awareness cards, which offer a description of Cammy and Rett syndrome, and include links to our Facebook page and the IRSF website so that people can learn more.

Recommended Reading

January 28, 2022 News by Marisa Wexler, MS

RSRT Invests Over $3M in Research Toward Finding a Cure for Rett

In October 2014, Cammy and I were waiting to board a flight back to Chicago. I was wearing my Proud Mom shirt, which features a wheelchair heart symbol. Cammy was in her wheelchair and had her Chicago Blackhawks blanket covering her legs. The Southwest agent checking tickets came over to meet Cammy and tell her how amazingly patient she was, especially since our flight was delayed 40 minutes.

While telling her all about Cammy, I noticed that several people in the check-in line were listening and smiling at us. There was a young, redheaded man typing on his phone, and he kept looking up and smiling at my daughter.

I was speaking to Cammy when I felt a tap on my shoulder. It was the redheaded man. With a big smile, he showed me the screen of his phone. It read, “Hi. I love your shirt. My name is Eric. I have ALS. Go Cammy! Go Hawks!”

I looked up with tears in my eyes and gave him a huge hug. Eric pointed to the line on Cammy’s card that read, “I ‘talk’ with my eyes,” and typed, “That will be me, too, someday.”

He pointed to Cammy’s card where it read, “I cannot walk, talk or use my hands, but I hear you. I am smart,” and he smiled and nodded.

I replied, “You know exactly how Cammy feels.”

Cammy and Eric Von Schaumburg meet in Boston, in October 2014. (Photo by Jacqueline Babiarz)

Until that chance encounter, I had only read about ALS. We learned that Eric was in Boston participating in a clinical trial as well. He wasn’t going down without a fight.

Since then, we’ve been following his journey on Facebook. Cammy and I feel fortunate to have met such a remarkable young man, who refuses to give up and continues to live his life. We’ll never forget his smile, kindness, and lighthearted humor. He reminds us that everyone is fighting a battle, visible or not.

Most importantly, Eric has taught Cammy to fight like a champion.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.