Documented case of a child with ES - success story

For all posterity, my son has agreed to allow me to share his story. Over time, details will get fuzzy, some of the experience will fade. I mentioned the power of connections through Ben’s Friends in this book. I took the time and money to put our experience in writing so that the information, research, and answers to commonly asked questions will always be there for those who follow in our footsteps. Thank you again to those of you still on this site who helped save my son’s life. or


It’s great that your son and you have done this to share your story! And thanks for mentioning Ben’s Friends! Without this site I doubt I’d have found out about the surgeon I saw, I’m really thankful to Ben’s Friends also. We love a success story here!
I’m sure others will find his story helpful, and maybe even doctors…


Thanks Jules. I have a whole chapter dedicated to the social media that helped me diagnose and treat my son. Ben’s Friends was a big part of that chapter. Hopefully, it will bring more people and support to this site. I am not sure if this new format supports private messages like the last one, but I would love to know how you are doing? And is @Heidemt still on this site? She was a huge help to me too.

I also gave a generic thank you in the dedication to all my ES friends…since the old messages are gone, I can’t remember everyone’s handle but there were so many people on this site that helped me–I am forever grateful.

Ear_Mom, if you want to email someone privately, click on their screen name & a window will open w/ a blue rectangle in the upper right corner that says MESSAGE. If you click on that it will open a link for a private email to that person.

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heidemt has stepped down as a Moderator, but still has a look now and then.

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It is also available on Amazon now (other retailers to follow).