Denika - Newfoundland

Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........

A couple months ago her mom told me they were looking to go further in to the treatments and really do what Haven had done. Of course I was excited - I only want her to feel better and end this ridiculous disease. I told our doctors and randomly keep them updated on kids anyway. But in this case - they already knew.

Denika underwent her third surgery for a PICC line. Haven has a Cath-o-Port which is definitely much easier than a PICC/Hickman line. With the PICC line it is so easy to get infected or pulled out. We only had to endure the Hickman for 2 months and it was enough to make me crazy.

Denika has spent most of the last year in hospitals in preparation for these treatments. Not to mention three surgeries just for the PICC line. She was finally let home for Christmas to spend time with her family. They weren't sure she was going to be able to.

At the end of January/Early February Denika hopped on another flight to Toronto to begin her 4 day treatment of Hi CY. This is what Haven went through in 2009 - almost 2 years ago. Denika has been doing the IVIG treatments for almost 6 - 8 months now. She is just so adorable....I love her!

When she arrived in Toronto they immediately set her up with a sleep study to get her base line readings and prepare her for an extended stay.

About 2 weeks after Hi CY I received an email from her mom that Denika had lost her hair but her spirits were up. She had an infection while on antibiotics but was doing much better. She even told me that in just those couple of weeks they'd noticed a difference in Denika. I believe our first sign that something was working on Haven was the drop in blood pressure and being able to take her off the medication she'd been on for 2 years. Then it was that she was suddenly potty trained during the day.


On March 1st Denika celebrated her 6th birthday at the hospital. The pictures are amazing. I love seeing her smile. She looks like she was having a blast.

Now it's March 7th and Denika was allowed home on a day pass to visit with her family. We've been keeping up on Denika and are certainly happy she is doing well and able to come home even if for a day.

I was also contacted by a mom in CA that will begin following Haven's treatments. The doctors have been working through many of the details. Then our sweet Sophia in Massachusetts is being worked up to begin the treatments. She is currently in the beginning stages.

I am amazed daily at these children. The way they fight through treatments, medications, and being judged by their cover and not their poetic stories. I am honored to know all of these children and be part of their lives.

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.

Denika - ROHHAD and GANGLIONEURBLASTOMA CANCER

We first met Miss Denika at the end of summer last year. I spoke with her mom, Trina, quite a bit and discovered Denika was exactly like Miss Haven. She had just had surgery to remove her Ganglioneuroblastoma Tumor in the abdomen and her doctors were now trying to figure out ROHHAD.

Denika was flown from her hospital in Newfoundland to Toronto for evaluation.

Here is her private plane. Once evaluated in Toronto I was amazed to receive an email from her Endocrinologist asking for advise and info on what Haven had been doing. I immediately sent her an email back with a short synopsis of our treatments and the plan. Then I also encouraged her to speak with our doctors and discuss the best options for Denika. The next day our doctors called to ask if it was ok to speak to them on behalf of Haven. ABSOLUTELY. Next thing I knew Denika would be getting a port in place and would begin IVIG treatments.

Here is Miss Denika at her birthday party. She is so beautiful. She has been doing IVIG for a few months now. I keep in touch with her mom as best as I can. Life gets extremely hectic when you're running back and forth to an Oncology office for treatments. But Denika is doing great and I love seeing her photos.

We love you Trina and Denika.....

Josh Wooten - ROHHAD

This is Vanessa (Josh's mom) and Josh. Last summer Josh received pacers in his chest to help him be able to stay off the vent longer. By the Fall he'd built up his body enough to be able to go out and hunt with his dad. We're extremely proud of Josh. He's done a great job.

In late January 2010 Josh spent quite a bit of time in the hospital. Constantly running fevers and having intense chest pains. Multiple CT scans and x-rays. Definitely not a fun way to start off the year.

After all the testing they were finally told he had H1N1 and double pneumonia. Keeping in the hospital for a long time. It's extremely hard when they get sick especially something as horrible as these.

Josh has recovered very well yet is still constantly hit with what "normal" people would call a cold that is entirely different for him. This year he, along with his family, welcomed his new nephew. Baby is just adorable. Josh is an amazing boy and an inspiration to everyone. Love to his family.

You can read up on Josh at his site: JOSHUA WOOTEN

Mason Byrom - ROHHAD Syndrome

Aaaahhhh yes.....our sweet Mason! If you know Haven then you know Mason! He's like the son I haven't had. He's such a part of our family and Haven's best friend. This is a photo of Mason before ROHHAD.

The last few months have been crazy for Mr. Mason. In October his doctors had spoken with our doctors about the treatments Haven has done for her ROHHAD and some of the symptoms that had reversed on her.

Then in November Mason's doctors decided to start him on IVIG and High Dose Dexamethasone to start testing it out with him. He was having to be in the hospital 4 days a month for treatments. This was a lot for Mason and after 2 rounds they decided to let him do it at home.

At Christmas Mason received his very own Cow Tree for Christmas. He is a huge fan of cows and the entire tree was cows!

This is Mason on his IVIG at home. After a few rounds of HD Dex Mason went in to a seizure following his IVIG and was rushed to the hospital. He was found to have lesions on the brain possibly caused by high blood pressure due to HD Dex. The doctors immediately stopped his treatment of this drug and have continued with the IVIG.

After Mason last IVIG he was doing great....until a few days later when he came down with a cold that ultimately put him back in the ICU for a week. He had developed a viral infection in the lungs and then his sodium had dropped to an unhealthy scary level of 118. Normal is 135 - 145. This kept him in the hospital for a few extra days. Mason did finally make it home for St. Patty's day and sent us this gorgeous photo of him.

Mason has one more dose of IVIG and then will undergo a CO2 challenge to see if there are any results from this treatment. This will help the doctors to decide if they must go further or wait a bit.

I don't know what I would do without Mason and his mom Julie! I love the stories of his sister Cameron and his dad is another one on the "most amazing dad" list as he is with Mason for everything. There family is so similar to ours that I sometimes think we're related!

We love all of you and wouldn't be able to do this without you.

Jessica Haight - ROHHAD Syndrome

JESSICA'S WEB SITE - http://jessicas-world-rohhad.blogspot.com/

Jessica started like any other child - healthy, happy, stubborn, melt your heart with a smile. Then around 4 years old she started sleeping a lot, gaining weight, wearing pull-ups again, and having what was initially diagnosed as sleep apnea and using a bi-pap at night. Nothing her parents did seemed to have any long term result.

Finally after lots of research, extensive testing, many doctors and 3 years they finally get a diagnosis - ROHHAD Syndrome.

Jessica traveled to Chicago to meet with doctors there and learn more about her syndrome. Going through even more testing and many more doctors Jessica was released after about a week and her doctors were informed of the severity of her syndrome.


Jessica is now 7 years old and was recently fitted for her wheel chair. Jessie lives in New York with her family and mother who is a nurse. Although you may think her mom may know what to do for her more than the other mom's but this syndrome just destroys all your normal mommy instincts and being medically trained can't contain your feelings of guilt. Jessica, like the other kids, just wants to go to school and play like the other kids. This syndrome just doesn't let them do that.

Mary, Jessica's mom, has become a great friend and although we've only known her a short time she's a welcomed addition to our family. You are doing a great job out there. We love Jessica and will be here with her for the journey!

Jenna - ROHHAD Syndrome

I have known Miss Jenna and her mother Lisa for two years now. Jenna's ROHHAD has left her unable to talk after suffering through her fourth seizure. The above photo was Jenna and her brother during their Disney Make-A-Wish trip.


Jenna spent New Year's and her birthday in the PICU this year after coming down with Repiratory Syncytial Virus (RSV). RSV is very dangerous for those already suffering respiratory problems as severe as Jenna's. RSV can not be treated with an antibiotic and requires more oxygen be given.
I just love Jenna. She is having fun here with her brother - and although flat affect is a trait of ROHHAD you can still see the smile in her eyes.

Last Summer I shared a photo of Jenna with everyone...she had taken a trip to the beach. I am so overjoyed when I see these little ones out there enjoying life. They are so much stronger than I can ever imagine to be.

Miss Jenna just a couple weeks ago. She is doing so well and with Spring around the corner we hope to see more beautiful pictures of Jenna.

Thank you to Lisa for sharing your beautiful baby with all of us. We just can't get enough of her! :)

Love to all of you.

Alexis - POSSIBLE ROHHAD

Alexis is new to our family. Her doctors haven't officially diagnosed her with ROHHAD as they are still trying to figure it all out and learn about it. But they are pretty certain that she does in fact have it. I put a chronological order of photos of for Alexis so you can see her change. The above photo is at 12 months.

This is Alexis at 2 years old.


This is Alexis at 3 years old. You can see the transformation between age 2 and 3.

Miss Alexis at age 4. She started seeing many doctors and having many scans done. They are slowly trying to piece the puzzle together. Alexis lives in Nebraska and has traveled to Mayo a few times a year and seen doctors there that also believe she has ROHHAD.

This is what Alexis' room has become.

Alexis turned 7 years old on March 18th. She now wears her mask to sleep and is constant work ups with her doctors. Alexis will have a tough road ahead as the doctors sort through her complex ROHHAD symptoms and work with her tumor at the brain stem.

I have only recently met her mother through our Facebook ROHHAD site. We talk almost every day and try to compare notes. There is a lot to learn when you are first diagnosed with ROHHAD and then once you learn about it you realize there isn't enough information. We're happy to welcome Alexis to our family but sad we had to meet her this way. We love all of you.

Niketa Brown - AUSTRALIA

Niketa comes to us from Australia! The above photo is a picture of Niketa (left) in 2007 - right before ROHHAD hit. She was and still is a very active child. She loves to dance. But in 2008 something happened and Niketa change dramatically. She suddenly started gaining weight and her breathing was getting terrible. She ended up in the hospital ICU for over 11 months and wasn't allowed to come home for more than 2 hours a day and had to be with her nurse the entire time.

Finally in June 2009, Niketa came home and everything was changed. But she was finally able to start seeing her family and spending time with them and not have nurses surrounding her. This was Niketa's first night home in her own bed with all her machines.

A few months later Niketa had to go back in to the hospital for her lung function testing. She is in often for her MRIs and CT scans and meets regularly with all of her doctors.

Although Niketa has ROHHAD she is not letting it slow her down. This girl is still out there dancing and competing. She even won first place in her school dance competition!

She has also gotten in to modeling for sleep study commercials! :) She's probably the best model I've seen with wires and straps! She definitely keeps a great attitude about it.

This is Niketa during her last sleep study. Again, I still don't know how they expect the kids to sleep and give results with wires and tubes all over them.

Niketa recently had to have a CT scan which was more difficult than it normally is. A ROHHAD child has a tendency to have "frozen" limbs - that's what we call them. They suffer from thermal dysregulation which causes the limbs to be very very cold. This doesn't help the veins when trying to get a needle in them for an IV. The vessels constrict making it too tight to get to. Finally they did the CT without the contrast --- we are still awaiting results.

We love you Niketa and can't wait to see your next recital in photos! Keep up the great work mom, you're doing awesome! Lots of love!

Noreen - NETHERLANDS

Noreen was born March 18th, 1999. That's right - she just celebrated her 11th birthday YESTERDAY! Noreen lives in the Netherlands with her family and was diagnosed with ROHHAD Syndrome.


When I first started talking with her mother she was reasearching and trying to find out everything she could - like many of us. You are given a disease you've never heard of and neither has anyone else. Noreen has done great this year. She got a new bike and has lost 13 pounds! Amazing for any ROHHAD child. I sure wish I could figure out her secret!

Noreen wears a nasal cannula at night to help with her O2 levels.

Noreen now wears a wrist-pulse that checks her oxygen and heart rate 24 hours a day. She will go back in for another MRI this May and we'll get some updates from her mom. Their family is also in the process of planning their summer vacation to Portugal!!!

Have a great Summer Noreen -- WE LOVE YOU - Have a great birthday! We'll bug mom for some pictures of your vacation!

Sophia Adamo - ROHHAD Syndrome

Sophia was born October 19th, 2004. She was diagnosed with ROHHAD Syndrome on December 18th, 2008, and her mom began researching this unknown disease. She stumbled upon Haven's site and quickly we began to talk and share information. She joined our family with open arms.

Sophie now battling this officially for over 2 years has seen her share of many hospital stays, sleep studies, pokes of needles, blood taken. She has endured almost a dozen hospital stays for Pneumonia alone in the past two years.

From March 2009 through January 2010 Sophia has not been able to lose the weight even though on a strict diet - as all ROHHAD children are. She has grown 1/2" and she had a wonderful 5th princess birthday.

As of last week Sophia is now on 12 different medications a day and was recently put on blood pressure medication and is in constant visits with her Cardiologist.

Like all of our families - Sophia suffers from a life-threatening disease that at any minute could take her life. Due to the unknown factor of this disease she has been turned down from Make-A-Wish but her mom continues to push her paperwork through in hopes of giving Sophia a vacation from doctors and hospitals and show her what being a kid is like.

I have watched Sophia grow and love this little girl. Her mother has endured so much with trying to work and take Sophia to the doctors and hospitals on her own. Not to mention she is 1 of 6 children. We don't know how her mom does it but we're here to support her!

Sophia has a site on Caringbridge which her mother updates frequently - I urge you to take a few minutes out of your day and read about our Sophia.

WE LOVE YOU SOPHIA AND MAUREEN!!

Check Sophia out HERE or click on any one of her photos!