In 2007 when Haven was first diagnosed and we first learned of her Cancer and ROHHAD Syndrome we had no where to turn. Our doctors told us about a boy in Chicago that one day stopped breathing and that's what Haven has. Then in an effort to prove them wrong I set out to spend my life searching for anything else and to find out what the heck this disease was. Only what I found was NOTHING! Seriously, 5 years ago there was only 3 maybe 4 articles on the web that had anything to do with ROHHAD and none of them said anything. I finally found a mom, Vanessa Wooten, whose son has ROHHAD and she had a blog about it. She was the ONLY person in the world I could find. I spoke to her through email and stayed up on her blog while starting this one. Then I found another mom who had left a comment on Vanessa's blog - Julie who has a son with ROHHAD. That lead me to Lisa who has a daughter with ROHHAD.
At the time Haven was diagnosed it was documented that there were less than 30 children WORLDWIDE with this illness and less than 8 with the cancerous tumor.
I contacted NIH and NORD to inform them of this rare disease and the fact that they did not have it listed. After a few months they wrote me back and thanked me and have since had it on their website. I wrote a Wikipedia article about ROHHAD and what I know of it. My husband created the website ROHHAD.NET to help families. I also set out to connect the families of ROHHAD through Facebook by creating a site we could all go to and since then we have met many families around the world and stay connected to this day. We have spread awareness of our disease and done TV shows and newspaper articles in hopes of shedding light on us and the fact that we need help and we need a foundation for our children.
I used to have a paypal donate button this site for Haven - which after almost 5 years paypal has decided I can't have this button and has frozen all of Haven's money. Amazing right....and they won't even call or email me back. I have to wait 6 months to access it. So that has since been removed.
I am proud to share that we now have a foundation that is there for the families of ROHHAD and are helping in the research of ROHHAD.
ROHHAD FIGHT, Inc. is a non-profit organization working for us and helping our families through fundraising and donations.
Please check out their website as they are working hard for all of us - ROHHAD FIGHT, INC .