Exciting News….

This has been in the works for a while and it is now getting close to being active. 

The primary goal of this website is going to be to connect families all over the globe that have been affected by this illness.  I believe that together we can become more knowledgable about the best treatment and care for our children.  My hope is that we can come together as a community to support each other, education each other, and share research.  There are still some details to work out but the website will be live shortly.  If there is anyone that would like to help or has any ideas or suggestions for things they would like to see on this website please leave a comment and let me know. 

The website will have a forum where we can all ask and answer questions, which is the most immediate need to most families right.  I have more ideas that I would like to have happen on this site but will need more time to work on them.  I have decided to get the website live as soon as possible to that we can start sharing information immediately, and the site will get more sophisticated as time goes on.  Please stay tuned for more information.

6 thoughts on “Exciting News….”

  1. It’s great to hear that Logan is doing so well. I remember when you were in Thinker Toys seven months ago. I hope you and your family have a wonderful Christmas.

  2. This is so great. If i can help in any way please let me know. When i first found out about Jakes condition, when i was pregnant, i could not find very much info. Now that i get to talk to and help others through this it is a wonderful feeling. Glad to see Logan doing well. Jake will be having the bidirectional glenn soon. They have not set a date yet, just told me somewhere between 4 and 6 weeks from now. Sending heart hugs!!!!!!!

  3. WOW INCREDIBLE, ITS AMAZING TO FIND OTHER FAMILYS THAT ARE GOING THREW THE SAME PROBLEM AS YOU..MY SON RUBEN IS 4 YEARS OLD. HE WAS BORN WITH HETEROTAXY SYNDROME.I LIVE IN BRONX, NY AND ITS VERY RARE TO SEE KIDS WITH THAT TYPE OF SYNDROME..

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