Summer 2009

So we have kept in contact with our friends as much as we could while in isolation all summer and most recently this month. Time just slips by and you don't even realize it! We met some new ROHHAD children and we continued to learn of our disease through talking with each other. Comparing notes and symptoms and treatments tried by doctors is a great way to learn how to beat this illness.

We are so happy to be able to share our story and the other children. Finding out our daughter has cancer was devastating and then to find out she also has a disease so rare that no one really knows about it and there is no treatment or cure and this disease can kill is unimaginable. One night you go to sleep happy and the next day you wake up and your child is slowly passing and no one knows what to do.

Together the moms of ROHHAD children have joined together to fight this disease and hope you will continue to share our story with your friends and family and that they share it. Help our children not be forgotten. Please read our stories:


NOREEN
One of our newest friends, Noreen. I met her mother a few weeks ago as she emailed me wanting more information on ROHHAD because her daughter had been diagnosed. She lives in the Netherlands and her doctors have been in contact with the doctors from France that originally wrote about ROHHADNET.

Noreen is 10 years old and all of her symptoms began to show about the same time Haven's did - Early infancy.
As I learn more about Noreen and her mom Alieke I will be happy to share. There is so much to know. We hope all of you are doing well.



SHELBY
I would like to introduce Shelby. She lives in California and has been diagnosed with ROHHAD Syndrome. We just learned of Shelby this summer while we were at the hospital. My dear friend Maureen, Sophia's mom, introduced me to her story. We do not know much about Shelby or her story yet but I am excited to talk to her mom and learn more about all of them.

Shelby has been battling a serious case of the flu. A ROHHAD child getting sick with anything is a very scary and dangerous combination. Shelby had IV medication for 5 days and is slowly recovering at home.

We wish you well Shelby and hope to be in touch soon.



CHARLIZE JOLIAT

I introduce Charlize Joliat. If you remember I found this article in Canada about a girl diagnosed with ROHHAD Syndrome. This is that beautiful little girl.

Originally tested for Kawasaki Disease but when that came back negative she began testing for Cushings Syndrome in December 2008. In May 2009 they were still testing Cushings when she began to have ventilation issues. While in the hospital she contracted Rota Virus and finally on July 17th Cushings was ruled out. On July 18th they began working with Chicago and Dr. Weese-Mayer's team. She was tested for PHOX2B - which came back negative and confirming ROHHAD Syndrome.

Since July 23rd she has been on a 1,000 calorie diet.


Charlize in the hospital. Their family is preparing for the trip to Chicago and making sure Charlize is healthy enough to travel. The doctors in Chicago are suggesting she have a tracheotomy before traveling but her doctors believe her bi-pap will suffice.

Charlize is required to wear her oxygen mask at all times. We have not heard back from her mother as to when they will travel to Chicago. We wish them good news and safe travels. You can read more on Charlize at: caringbridge.com/visit/charlizejoliat

JENNA
As I was locked away this summer with Haven and Kris in isolation I was not able to keep in good contact with all the moms. But we did receive a sweet email from Lisa, Jenna's mom, that she was able to go to the beach for the first time in 3 years since being diagnosed with ROHHAD. Jenna has been on a ventilator since being diagnosed and is unable to speak due to the multiple seizures that ROHHAD has caused.

I was very excited to learn that Jenna went to the beach and had a great time. I love to hear that. We hope to hear more from Lisa and Jenna. Love you all.


NIKETA BROWN

This is Nikki and her sister Tiffany from Australia. This photo was of Niketa right before she got sick and went in to the hospital. Beautiful coloring girls!

Soon after Niketa ended up in the hospital and this is when I met her mother Karen. She had been in the hospital for some time and it was hard to catch Karen as she was back and forth seeing her daughter and still taking care of the rest of the family. This photo shows Niketa getting ready for her MIB scan.

Niketa (or Nikki) spent 11 months and 8 days in the hospital. Can you even imagine? I was heartbroken for Karen. I couldn't do it. Nikki stayed strong and so did her mother and family. Periodically we'd get an update from Karen that all was good but she couldn't talk. This photo shows Nikki doing her lung function testing. We're very happy Karen has able to take some time and enjoy life lately.

Nikki has finally been released from the hospital and is home with her family. She is required to sleep with a mask at night but we hear she is doing well considering. I couldn't imagine how Nikki managed that length of time in the hospital. We love you all and we're glad you're back home!!!


MASON BYROM

Mason really had us all worried this summer with a scary night of dangerously low oxygen levels and increase CO2 levels. He was rushed to the hospital at the beginning of the summer only to find out that he had Pneumonia. Very dangerous when already on a ventilator to breathe. Mason was kept in isolation over 2 weeks.

He was sent home with an Oxygen tank and it still remains in his room. Mason is hooked up to the ventilator when sleeping. However, during his stay at the hospital and for a few long days afterwards he had to stay hooked up 24 hours a day with extra oxygen.

Although Mason had a rough start to his summer he sure did make the best of it all. Mason became a Chef for a day and went to lots of baseball games. He's a huge Cardinals fan out there in St. Louis! Mason also celebrated a huge 5th birthday this summer. HAPPY BIRTHDAY MR. MASON!

A few weeks ago Mason had another bout with an illness that had him rushed to the hospital. He was in for a few days on oxygen and monitored closely. Once home he rested for a few days while staying on his ventilator. He is now back in school and has even had a meeting with Make-A-Wish. We're excited to see what Mason wishes for!!!! Check up on Mason at his site: caringbridge.com/visit/masonbyrom

SOPHIA ADAMO
Miss Sophia had a rough beginning of the year that led in to a rocky start to the summer. She had Pneumonia three times before the start of the summer and her blood pressure and heart rate began to climb steadily. Sophia was in the hospital in July to undergo an Adrenal Gland procedure. Some children with ROHHAD have developed other life-threatening illness caused by ROHHAD and everything must constantly be checked.

Although Sophia had another occurrence with Pneumonia she was able to have some fun at the lake and hanging out with her family this summer. Sophia also began preschool this year - above is the photo from her first day of school.

Miss Sophia celebrated her birthday recently. Turning the big 5! HAPPY BIRTHDAY SOPHIA! During her birthday party Sophia began not feeling so great and was back in the hospital to find out that once again she has Pneumonia. She has a great team of doctors and her mom is awesome about getting her to her appointments and keeping us all updated! You can read more about Sophia at her site: caringbridge.com/visit/sophiaadamo Love to all of you.


JOSH WOOTEN

Josh had a huge summer. Being on a ventilator for many years 24 hours a day 7 days a week with minimal breaks Josh was finally old enough and ready to have surgery to insert a pacer that will help him breathe and let him be free from the ventilator.

This is the diagram of the breathing pacers and how they work.

Slowly over the summer Josh has worked on his breathing and making his diaphragm stronger with every breath he takes. He has done an awesome job and so has his mom Vanessa. It is amazing to see photos of him at the shooting range, bowling, and even playing basketball. We're proud of you Josh! Josh is also about to become an uncle! What a great summer. You can read all about Josh at his mom's blog site: vwootenworld.blogspot.com