Thank you for taking the time to read this, and help me put something back.
My name is Max Kohl and I live in Chicago, Illinois.
I am 17 years old and I was born with Tracheo-Esophageal Fistula (TEF). Like many TEF babies, I had surgery when I was 7 days old to fix my esophagus and I have had over 10 esophageal dilations in my lifetime. I spent more time in the ER than anyone I know and I still see multiple doctors at Lurie Children’s Hospital of Chicago.
17 years later, I live a pretty normal life. I study a lot, and I spend time with friends and family. I always say my parents had it much harder than me. I don’t remember any of the stuff at the beginning of my life—but they will never forget any of it.
As I get older, I think about how TEF shaped me.
I started thinking…what if people with TEF could connect virtually? And share their experiences and what TEF has meant to them in their lives? Would that make a difference? Would we feel better knowing there are many people out there like ourselves?
I am embarking on a project to unite the TEF community and I am asking for your help. Can we please try to get the TEF community together? Maybe we can have a virtual meeting where we get together and meet each other? Not to give medical advice, or to feel bad for ourselves. But rather to unite as a community and feel connected to something that while we didn’t ask for, it is part of who we are.
You could be a kid with TEF, a parent of a TEF child, or a TEF Adult. I am hoping we can connect in a way that we haven’t before. I look forward to hearing from you and thank you in advance for helping me on my mission.
Sincerely,
Max Kohl
