Help Max Kohl by filling out the enclosed form Regarding Ea-Tef

Hi Steve

My name is Max Kohl, I live in Chicago and I was born with TEF.  My mom reached out to you a few months ago to tell you about a passion project I have been working on. I have created the following email and google form and I would appreciate it so much if you would include it on your Born Unable to Swallow website.

We are also going to put this on the FB pages my parents are a part of.  If you have any questions or want to connect, please let me know.

Thank you again for your help with this!


Help Max Kohl by filling out the enclosed form Regarding Ea-Tef

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.


Max Kohl