Call to all CHAOS parents

Hi everyone,

As we are slowly adjusting to life with a child with CHAOS, we are wondering how other parents go through this. We are also curious about your experiences, tips and most importantly how your child is doing. We know of one other child with CHAOS, Kalmin, in the U.S.A. and really enjoy talking to his family through skype.

Thus we would like to get in touch with you! So, please send us a mail, and hopefully we can get in contact and help each other out. We have opened a special mail address for this:

CHAOS supportgroup at gmail.com (all one word before the @ sign)

With your permission I would also like to gather some information about the doctors that have treated your child (names, specialisation and email address of the treating doctor), so any doctor with a new CHAOS child can get information from his or her colleague. This is also important for us, as Noah will need throat reconstruction surgery in the future, and this is still a very experimental procedure. So any extra information is welcome. We will of course supply you with this information as well.

Thank you very much and we hope to hear from you,

Noah, Thijs and Louise