ROHHAD FIGHT, INC

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 .

18 Years/no diagnosis - until Haven's Mystery Diagnosis aired

A few days after Haven's episode aired I started receiving emails from people saying the watched the show and were happy to learn about Haven. One email hit me with a mystery diagnosis of her own that was finally solved with the show. Below is the email from the girl's mother:


Wow! Haven's mystery diagnosis story aired here in Florida about 2 hours ago, and I am just nicely able to stop crying and compose myself!

My daughter heather was born along with her twin brother on March 5, 1990. She was born happy and healthy and I have footage of her 2 years before all of this ROHHAD stuff took over our life, that I cannot even view, not even 18 years later!

She was this sweet and full of spirit young girl, and she and her twin brother were so fun to watch together! In September of 1992 we began to notice her appetite just went crazy!

Soon after she began to gain 15lbs-20lbs a month, and her stomach was very protruded. We lived in a small town where people couldn't wait to have something to talk about. People even wondered if she was somehow pregnant! That was the end of the line for me! I too took her in to see a Dr., we did not have health insurance and the doctor wanted to run some ridiculously extensive and expensive tests! We took her home scared to death, that something was seriously wrong and we didn't have enough coverage to pay for the testing!

January came and she was still gaining weight, and she had this terrible snore/breathing pattern which really freaked us out. January 9th, 1993, we could not wake her from her night of sleep and her lips were blue! We took her into our Dr. and he sent us to Albany Medical Center via ambulance. Heather was fine while she was awake, but the moment she fell asleep, she de satted! They intubated her and we were in for 8 weeks of hell with all kinds of testing and temporary diagnosis. She actually had a reaction to all of the drugs she was being given which was mistaken for brain damage! They removed all of her tonsils, adenoids, and even her uvula. Then she was given a permanent trach! Diagnosis CCHS.

We knew she wasn't born with it, and the weight gain, none of the other children spoke of with this disease had the weight gain! Heather has been operated on several times for strabismus, and it comes back every time!

Finally all these years and a show watched due to the very fact that we somehow knew someone would be on there someday with Heather's actual symptoms!

God bless you all! We have yet to find a physician in the 2 years that we have lived here in Florida! I am hoping it will be someone who is at least familiar with the term!

I would love to hear from you! and thank you so much for having the courage to be able to do that!

Sincerely, angela

Thank you for contacting me Angela! I am truly honored to meet you and Heather and to be able to share her story. I can't believe you have looked for a diagnosis for 18 years.....but ROHHAD is a hard one to figure out!


Here are photos of Heather for our fans:

Heather with her twin brother --- cutie pies!!!

Heather with her brother right before the weight and changes began

As she got older the weight began to pile on.

Heather today (with her twin brother) at 21 years of age.

ROHHAD on Mystery Diagnosis

If you missed the show last night you can watch it on the internet by clicking the picture above!!!!


EDIT: ok - so they are only giving you 4 minutes.....I'm sure it will be on again

Mystery Diagnosis and Hopkins Children's Caring for Kids Fundraising

Tonight is the night!!!! Haven's episode of Mystery Diagnosis will air at 8pm EST.....to find out what channel it's on in your area please look at the OWN web site and type in your zip code!



Well we're inching up to our goal!!!! Help us help Hopkins reach their goal of $20,000!!! Click the above picture to donate!!!!

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.

MISS HAVEN ON MYSTERY DIAGNOSIS -
JANUARY 12TH AT 8PM EST!

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!

A few updates- School

A few updates to note:

Next update is School. I met with about 12 people right before Easter at the school, including Haven's doctors and nurses. We discussed all the needs for Haven to attend school and what the school would require from the doctors. Happy to report that Haven will begin school on Monday, April 12th. She will only attend school from 8:30 - 11:00 am. Kindergarten is normally a full day (8:30 - 3:45). But will start out with a modified schedule probably through the end of the year. She will then attend graduation from Kindergarten in June! She is pretty excited but at the same time very very nervous. She will still have home care teaching her twice a week for 3 hours in the after noon.

This weekend we're going to work on her scrapbook to take to the school. She wants to show the kids where she's been the past few years and teach them about her treatments.

Lots of love to all!!!!