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.

Sofie - An Angel Reborn

The broken cord

We little knew that morning that God
Was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
You did not go alone;
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide;
And though we cannot see you,
You are always at our side.
Our family chain is broken,
And nothing seems the same;
But as God calls us, one by one,
The Chain will link again.

Our dear ROHHAD family has been hit hard once again as another beautiful baby has joined the heavens. Sofie became a guardian angel to all ROHHAD children on Saturday, January 22nd, 2011. She has forever touched our hearts and we miss her dearly.

Sofie was able to be visited by another ROHHAD baby while in the hospital. Sophia and Sofie played and played. Having a blast.

Sophia, Sofie, Mackenzie hanging out at the hospital.

Sofie (middle) was admitted in to the hospital in Boston for constant vomiting. They changed her medication and she was discharged with no further issues. She had a sleep study only a couple months ago that show a perfect sleeper. No obstructive or central sleep apneas present. She was then admitted back to the hospital for high sodium levels (a constant problem with ROHHAD). When she became stable she was discharged to a pediatric psych hospital to work with her behavior.

One week ago - Saturday, January 15th, Sofie was admitted back in to the hospital for high blood pressure and swelling. Monday, January 24th, Sofie was set to be discharged from the hospital and while waiting for the papers decided to take a nap. During this nap she suddenly stopped breathing and fell in to a coma.

Saturday, January 22nd, 2011, Sofie passed away. She has truly left a mark on our small ROHHAD family and will be remembered along with our other angels.


WE LOVE YOU SOFIE!!!

Ariel -- One of our newest friends

Ariel is a 16 year old girl with Static Encephalopathy,Intractable Epilepsy, IBS and Chronic Tenosynovitis and is significantly cognitively impaired. She loves animals of all kinds and loves people to stop by and say hi,so please do.

From her mom - Linn:

Ariel was born 3 weeks premature ,which none of us thought would be a big deal,but boy were we wrong.After birth she immediately started turning blue and they spent 8 hours trying to stabilize her to transport to another hospital.We later learned she had respritory distress syndrome.We were told there may be all sorts of medical and physical problems for her because of this and that she would be in NICU for 4 months!

She started having a lot of stomach issues at about the age of 8 and after several endoscopies and numerous tests she was diagnosed with IBS. One Saturday night she collapsed on the floor in pain and her legs seemed to be stiff. We took her to the doctors and they admitted her to the hospital. The next day after an MRI they said she had osteomyelitis in the spine (infection of the bone) . They put a picc line in her and she was pumped with antibiotics for 4 weeks and then given 2 weeks of oral ones. She then developed colitis from the antibiotics and this seems to be where the story begins medically for her.

In June 2009, Ariel went into Status Elepticus and was in PICU and the hospital for a week. Since then she has been in and out of Status several times. She also got a Make A Wish trip to DisneyWorld. She also has 4 brothers Nick 22,Bret 21,and an MP in The Army serving in Iraq, Michael 17 and Daniel 18, who also has a caringbridge site. Please say prayers for Ariel and sign her guestbook to give her support.God bless,Linn


Please visit ARIEL: HERE

Josh Wooten Update

Josh turned 14 this year!

Josh was selected to go on a dream hunt near Del Rio in December 2009, thanks to TNT Outdoor Explosion and Cast of Dreams. He shot his very first deer, a big buck. He even made the front page of the Del Rio newspaper the next day.



A note from Josh's mom about Josh and how he was diagnosed:

Everyone thought Josh was perfectly healthy and normal when he was younger.

His first problems were: sweating more than normal - which he's done since he was a baby,
failing hearing screenings - as early as 3 years of age (they said the trouble was in the high frequencies and he can hear most normal speech just fine), and a learning disability (discovered in 1st grade when he could not seem to grasp basic math and reading). Otherwise, Josh was active, rarely sick and usually quite happy.

It wasn't until he was 8-and-a-half that we discovered there was something seriously wrong with him. He'd had a throat infection and finished a course of antibiotics. He would get up and go to school ok, but come home and fall asleep on the couch and not be able to wake back up and stay awake. He was missing out on playing with his friends, going to a favorite church function, and he wasn't eating much. This lasted a few days. I thought he was just still recovering from that throat infection. But after having a bath to try to wake him enough to finish his overdue homework, still wrapped in a bath towel, he collapsed in front of me.

I got him to his bed, realized he was very hot, took his temperature and found he had a fever of 103. I gave him motrin, got him dressed and took him to a minor emergency clinic - thinking he likely needed more antibiotics. Instead, the doctor found his blood oxygen level was very dangerously low (50 percent and it should be 97-100 percent). They called an ambulance that rushed him to the hospital. The next morning, he went into respiratory failure and had to be resuscitated 5 times before getting him onto a ventilator. But they finally got it right and saved him. He spent the next 2 weeks in the ICU. While there, he lost feeling and movement in his left side and had a seizure. But powerful steroids and lots of IV's seemed to work and he got better soon.

Doctors did not find the real cause of his problems until months later and another hospitalization. He relapsed while at a Sunday Church Service with the rest of the family. Again he was rushed back to the hospital. After several more tests, doctors found the diagnosis they were looking for. His diagnosis was a combination of a few things: central hypoventilation (a part of the brain causes the body not to ventilate properly).... because he did not have that particular problem from birth, they called it Late-Onset. But his body was not producing cortisol as it should either. An endocrinologist said he also had hypothalamic dysfunction. After doing research about his condition, doctors made a decision which changed everything.

One of the doctors came out and talked to me privately. she said that Josh will not be able to breathe on his own ever again. That meant Josh will need to be hooked up to a ventilator 24 hours a day. But in order to do that, he had to have a tracheostomy tube inserted in his windpipe. To do so, doctors had to cut a small hole in his throat before the tube can be fitted in place.


You can read more about Josh at his mom's web site: CLICK HERE or click on the pictures above.

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