Monday, December 1, 2008


Below is a cross reference post from Vanessa Wooten's blog site - I really hope you have had a chance to visit it and continue to check on Josh and their family. I am very thankful to have found her and hope to find more mom's out there!

Josh at the Special Olympics

I would like to introduce everyone that reads this blog to Joshua Wooten. He was diagnosed with ROHHAD in 2005. The Discovery Channel did a documentary on Josh and you can see it at Vanessa's blog site. Hopefully I will be able to visit Vanessa and her family some day and to meet Josh. Josh became the poster child for the disorder after the Discovery Channel - I would love for the Discovery Channel to replay this so more people can see it.

Josh takes 1st place - CONGRATULATIONS!

Josh's ventilation system that keeps him breathing

I have contacted his mother Vanessa Wooten and am able to talk with her. Where did I find her - FACEBOOK! I am finding that this site has connected me with more people than I could imagine. The Wooten family lives in Texas.

Other Children of ROHHAD - please see Vanessa's site for more info on these other children.

Leigh Ann W. of Kentucky. She was born April 1990. She began having symptoms at about age 2. Leigh Ann passed away of complications in February 1998 (at 7 years 10 months of age).

Jenna S. of Connecticut, who is now 6. Jenna seemed fine until she suffered a seizure at age 3. She was officially diagnosed at age 4. A major (2 and a half hour) seizure in June 2007 set her back by affecting her mobility and speech. (I did read about this is Dr. Weese-Mayer's report - but not name or location).

Scott C. of Illinois was diagnosed in 2002 at the age of 4. He is now 10 and currently still sees Dr. Debra Weese-Mayer. I am in contact with his mom.

Mason B. of St. Louis, Missouri - he was 3 years old when diagnosed. He was just diagnosed with ROHHAD and doctors decided to place a trach.

This is Mason B!

Nikki B. from Australia, was just diagnosed at age 7, but doctors there were keeping her in the hospital. In fact, at last report, Nikki is still in the hospital (for more than 12 weeks now).

This is Nikki B!

I am finding it comforting talking to these other mom's as they have already gone through what I will surely go through and what other mom's will go through. The more of us that talk about it will bring more attention to this rare disease. We should create our own organization as it seems there isn't anything out there on this.

This syndrome is scary because no one knows about it and usually by the time you know you have it then it could be too late. I have no idea what the doctors are planning but we have to decide if we're going to Chicago or not. I have sent Haven's detailed spreadsheet below to all of her doctors and the doctors in Chicago who have placed it with her records.

I also contacted NORD - National Organization for Rare Diseases as recommended by Haven's pediatrician. This disease is so RARE that they don't even know about it. They asked me to go back to my doctor and check the spelling. So I sent them all related articles, my blog site, and Haven's article from her Endocrinologist. Now I know they know about it.

Ok.....on to the next battle of the day and more doctors to drive crazy! Even if Dr. Badgett says I'm not driving him crazy I plan to! :)

1 comment:

  1. Hello Haven, i have been keeping up with your story through josh wooten's mom. I know you will be going through a tuff one soon just remember you are a strong little girl and we are praying for you! I am josh's nurse so I know about Rohhad but want to learn more... Stay strong, with love jenny