When Joshua was diagnosed with ROHHAD (first called Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction) then the Discovery Channel aired a documentary about him, he became the poster child for the disorder. Since then, though, we have had contact with other families dealing with the same disorder.
Keep in mind, this disorder is so rare there are only about 30 known cases in the world (the last I heard). Even the National Organization for Rare Diseases apparently did not know it existed until one of the mom's I'm about to introduce you to sent over information to them.
Below, are some children who share this diagnosis.
First was 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). Leigh Ann's mother, Vicki and father Glen, have shared with us extensively about their only daughter. They sent us copies of detailed medical records and articles on the disorder, in hopes of helping doctors and mothers like me find answers for these unusual symptoms.
Next, we read about an article about 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. Jenna is a trooper, though, and was even named student of the year at her school recently. I have talked to Jenna's mom, Lisa on the phone and emailed back and forth for about two years.
In August 2008, I was put in touch with the mother of 3 year-old Mason B. of St. Louis, Missouri. He was just diagnosed with ROHHAD and doctors were discussing placing a trach. Mom Julie talked to me by phone and when she finally got to a computer, shared some sweet pictures of her cute little boy with me.
In early November 2008, I got an email from Karen B of Australia. Her 7 year old daughter, Nikki was just diagnosed, 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). Her doctors are letting her out of the hospital for visits during the day - but require her back each night to sleep there where they can watch her closer.
And then, this past week, on our vacation trip to Odessa, on Facebook, I got a friend request from Misty Bateman, the mother of yet another child diagnosed with ROHHAD, Haven. Haven will turn 5 on January 26th - which also happens to be my birthday. Haven - who lives in California - not only has ROHHAD but she has a neural crest tumor. You can visit her website at http://haveyroo.blogspot.com/. She was diagnosed November 10th, but doctors had suspected she had the disorder for over a year.