My wife, Enedina Stanger, was diagnosed with Ehlers Danlos Syndrome a few years ago. If you have seen the Kansas City episode of American Ninja Warrior recently, they did a story on our situation that tells a little more about it. Here is the youtube video.
Also, if you want to read more details about the story, here is a link to a blog post about it that I wrote.
Our two daughters have been showing some signs of having this terrible disease but haven't yet been diagnosed.
There is a conference for people with EDS (Ehlers Danlos Syndrome) in Baltimore this August where a panel of specialist doctors will be able to take some time to speak with the patients there. We would be able to have the doctors see Enedina and also our 2 daughters.
We have never had an opportunity like this to hopefully get some help but we can't afford the trip. We have no idea if any help even exists but if it does, I think we'll find it at this conference.
I wish I didn't need to ask for this help but we are desperate to get to this conference! PLEASE help if you are able. Anything will help. Even if it's just a few bucks, it adds up.
Thank you for all of your help and support! We have felt love from so many people and we want you all to know that we love you all and appreciate you more than words can describe!
Also, if you want to read more details about the story, here is a link to a blog post about it that I wrote.
Our two daughters have been showing some signs of having this terrible disease but haven't yet been diagnosed.
There is a conference for people with EDS (Ehlers Danlos Syndrome) in Baltimore this August where a panel of specialist doctors will be able to take some time to speak with the patients there. We would be able to have the doctors see Enedina and also our 2 daughters.
We have never had an opportunity like this to hopefully get some help but we can't afford the trip. We have no idea if any help even exists but if it does, I think we'll find it at this conference.
I wish I didn't need to ask for this help but we are desperate to get to this conference! PLEASE help if you are able. Anything will help. Even if it's just a few bucks, it adds up.
Thank you for all of your help and support! We have felt love from so many people and we want you all to know that we love you all and appreciate you more than words can describe!
Organizer
Mike Stanger
Organizer
Ogden, UT