Tuesday, January 4, 2011

ROHHAD on Mystery Diagnosis and OWN (Oprah Winfrey Network)

Mystery Diagnosis
Trapped Inside Their Bodies
January 12th - 8pm EST

Will the bizarre growths on 17-year-old Matt's body eventually leave him trapped in a second skeleton? When two-year-old Haven starts to gain weight at a shocking rate, her parents have no idea it will spiral into a battle for her life.


At the end of September 2010 we had the privilege of having the producers and film crew of Mystery Diagnosis come out to film us and our daughter. Her episode is finally set to air on January 12th.

What will this be about? It is all about Haven and the pain and heartache it took us to get a diagnosis for her symptoms.

One day we filmed at Johns Hopkins Hospital with one of Haven's very involved doctors, Dr. David Cooke, Pediatric Endocrine doctor. Another day was at a studio and then we did a day of filming at our house.

Once the show airs I will describe the work and hours that went in to making a 30 minute segment for TV. Let's just say we aren't signing up to act anytime soon!

We really hope everyone watches it. If you don't know - Oprah Winfrey has her OWN network and Mystery Diagnosis is now on there. To find out what channel it is on in your area click on the picture of the channel finder above. It is a direct link to the section to plug in your zip code.

Haven specific segment is on January 12th at 8pm. You will learn about us and what we went through, Haven and what she has gone through up until her diagnosis, and even more important you will learn about ROHHAD.

We have a lot of ROHHAD friends now - well considering when you start you have none we now have 28 families around the world. I would've loved to have been allowed to mention all my ROHHAD families out there on TV - we want to let our voices be heard and let others know we are here. We hope this helps and we hope it helps another family on the tough road to diagnose their child.

Ok...so we're super excited.....I'll keep everyone updated! And my dear ROHHAD friends in Australia and South Africa ---- we'll make sure you get to see it!


  1. Hey sweetie. This is Augie from JM. I don't have satellite/cable in effort to cut back on bills. Is there anyway I'll be able to see this online? I'd love to watch it!

  2. Misty,Will you you tube it or something so it can be watched or will it be on their network.I don't get cable or have t.v. only for dvd's.I would love to see it.


  3. Interesting! I wonder when this episode will be on air here in Finland.

  4. I watched the episode the other night. For some reason my dvr didn't record it at the right time (I think it was confused because it was no longer Discovery Health). You guys did a really good job on the show. It was very interesting.