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!

Jessica Magnus --- Ganglioneuroblastoma Cancer and Progressive Neuromuscular Scoliosis

GANGLIONEUROBLASTOMA stage 3 and progressive neuromuscular scoliosis of 59 degrees

Jessica was born on September 18th, 2001. In December 2005, Jessica was diagnosed with Stage 3 Ganglioneuroblastoma Cancer - both malignant and benign tumor that was taking up most of her chest and wrapped around her spine.

Jessica's x-rays - showing curve of spine and Ganglioneuroblastoma Tumor


Today Jessica continues her fight for life. She wears her new Cheneau brace because doctors were only able to remove 25% of her tumor and during that surgery it caused a major curve in her spine. If her tumor continues to grow it could crush her spinal cord causing her to become paralyzed. Jessie has been all over Europe visiting doctors and misses a lot of school due to her cancer and scoliosis. Even with missing so much she has done very well in both the UK and Czech Republic!

Jessica is trying to get to the US to meet with experts here. Please visit her sites and learn about her. I became friends with her mother, Stana, immediately after Haven was diagnosed. We have remained in close contact since. I am lucky to have these two beauties in my life.

Please visit Jessica's site by clicking her photos or HERE! We love you Jessie and Stana!

Charlize Joliat - Beautiful Angel

Charlize was born April 22, 2004. We only met Charlize last Summer when we read about her story in a newspaper in Canada - The Sudbury Star. As soon as I saw it I sent it on to the other mom's. Instantly we all fell in love and watched her story bloom. Her family began taking donations immediately to get Charlize in to another hospital to help her. After a long five months of fighting and living in a hospital Charlize passed away on November 20, 2009.

I can't express how this shattered our small ROHHAD family and how quickly we all prayed for her parents.

Charlize joins other beautiful angels in the sky - Leigh Ann - to watch over our children and guide us in the right direction.

We still think of Charlize every day, however, I am a better person having met this little girl even if it was only on line. We love you Charlize.