Thursday, April 15, 2010

My Wish - ROHHAD

There is one thing I wish for: I would like to meet someone with ROHHAD over the age of 15! I want to talk to an adult with ROHHAD - I want to know what life it like after age 15. We can't find anyone over 15 and neither can our doctors. So what happens after that????????

After 45 years of a disease that has only claimed 50 or so kids --- you'd think you'd hear of one making it past 15 and at least a doctor could find out how they are living now.


  1. That's the trouble with a rare disease... Who knows if people were even getting diagnosed with this illness 15-20 years ago. Haven and her friends are going to be the first kids to do it!!

  2. Dear Misty,

    Still praying that a cure, treatments or whatever that is needed can be found so that Miss Haven and others can have a long healthy and productive life.

    With caring prayers,