This episode follows an adorable little boy, Kody, and his mother as they relive their journey and health scare. With the support of her mother and father, Kody’s mom does everything she can to make sure her son is alright. Here are a list of young Kody’s personal symptoms and a brief version of the path he took to get a final diagnosis.
Some of the symptoms he showed over time:
- In 1994 Kody was around 2 years old, he was gasping for air and had a barking cough. He was not breathing well at all.- Doctor believed he was asthmatic and needed to takes medication several times a day.
- Kody took breathing treatments everyday, and at times every few hours. He was still sick.
- In elementary school, he continued to cough a lot and was winded easily.
- After he turned 12, his symptoms seemed to disappear and he even was able to run track in high school. He no longer needed breathing treatments and they believed he had grown out of it.
- At 16 years old, Kody started coughing again and called his mom. They went straight to the doctor. – Doctor believed his asthma was back and he went back to taking medication.
- Soon after, he had a tickle in his throat and ended up coughing up blood and what looked like white raspberries. He was taken to Lucille Packard Childrens Hospital. – Dr. Peter Koltai, Chief Pediatric Otolaryngology, discovered growths along Kody’s trachea. He was prepped for a bronchotomy and additional surgery to remove the growths.
- Results from the lab showed that Kody had RRP, Recurrent Respiratory Papillomatosis.
Final Diagnosis:
- RRP – Recurrent Respiratory Papillomatosis is caused by the HPV virus. This virus can attack the mucus in the respiratory track. The virus can be passed from mother to child during pregnancy. However the mother never tested positive for this virus.
What is ahead for him:
- There is NO cure for RRP.
- IN a small number of cases the growths can become malignant, so Kody will need t continue with surgeries every 3 months.
- Close to ZERO % that he can pass this on.
- This condition is unusual and rare. There are only 6,000 cases in the US.
I wonder if someone had just done a more extensive exam to see down Kody’s trachea, if he could have been relieved of some suffering. Doctors are so rushed to solve everything within moments that at times I think we forget to stop and breathe. I only pray that this episode will help other parents diagnose their children sooner.
Oh my god.. i was so relieved when i watched this yesterday.. I’m not the only one with this growth.. except mine is on my voice box and vocal cords.. and i was diognosed with this when i was 2. and my first surgery was when i was 2, and the doctors too said it was just asthma.. and yeah.. i have been getting them lasered off also. and it use to be every 2 weeks.. now its every once a year.. i slowly got my surgery dates further and further apart.. but i’m 16 now and almost done. And it does get better.. wow i can talk about this forever.. but i’m glad i’m not the only one .. i love playing basketball.. but anyways.. yeah .. i understand.. sorry for any mistakes and errors..
Thank you for airing this. My 5 year old Mason has RRP. 18 surgeries so far with no end in sight. Very frustrating disease thats for sure! Thoughts and prayers with everyone!
How can I view the rest of this episode? I have this awful disease and am curious to see how others are coping.
To my knowledge, the full episode is not available. You can always check OWN and the Discovery Channels website and express your interest. Good luck!
I was very happy to see this aired, i have a 16 year old that was diagnosed with this at 13 mos old, (early 1997) We almost lost her before they figured out what was going on. The only thing i do not like about this program is M.D. allowing them to say that this boy had the “worst documented case of RRP” If they had done their research they would have found he had a VERY MILD case of RRP.
That doesnt change the life altering effect of it for him however. My daughter was finally diagnosed (after several MIS diagnoses) after having emergency surgery(and by emergency, i mean that there were nurses spanking her to keep her breathing while the surgeon had me sign the ok to try, but they gave her an 80% chance of dieing on the operating table….) to clear a blockage in her throat- they thought she has swallowed a toy. She had less than 5% of her airway open when the first surgery was done. This disease has DESTROYED her larnyx (voice box) and her vocal chords are ruined- one is slack and one is brittle. She can not speak above a whisper. We have been told multiple times that the Disease is winning, and she is not going to make it, her body was just to tired to fight, and each time she managed to pull out of it. She has had well over 100 surgeries for this disease, she has not gone longer than 9 mos with out surgery, and she only made it that long once. there was a point she was going in so frequently for surgery that it felt like we LIVED at OHSU/Doernbechers hosp. They tried Interferon treatments, (experimental) and they looked like they were going to help, but the side effects got so bad they had to take her off them, and then 3 years ago she had to have a Tracheostomy done, because her airway is so damaged from the papillomas that she was not getting enough oxygen.
So mystery diagnosis, and Kody’s mom- he has a mild case- i would give ANYTHING for my daughter to have what your doctors are calling the worst documented case rather than the one she has. She watched the program with me and was so mortified when they said that she burst in to tears……..I am not trying to be rude, and i know i am coming off as such, but my girl begged me to find SOMEWHERE to post HER story, so i did. good luck Kody, and also to anyone else whom has to deal with this atrocious disease, as well as the guilt on the moms part that comes with it for the blame you recieve FOR it, if you are a rrp mom, you know what i am talking about. I am pretty experienced with what you are going thru, if you want to talk with a mom that is in the same boat you are feel free to shoot me an emai= luvfrogs420@yahoo.com
Oh Debbie, My heart goes out to you and your daughter for what you have endured. This is an awful disease, while I wollow in self pity for having to deal with having RRP myself, I am so thankful that I am not a parent watching my child go through it.
My daughter is now 12. She was diagnosed at 3 after a very long road a lot like kody’s above. No cure, and countless surgerys. She is lucky to be alive today. She was said to be asthmatic and after her breathing getting worse and countless trips to every emergency room and still no one figured it out! I finally took her to an ENT doctor who wanted to remove her agnoids and tonsils to help with her “asthma” symptoms. When he tried to insert the standard breathing tube it wouldn’t go in her throat because of the growths! He performed an emergency surgery and told me how lucky she was to still be here. Her growth was on her voice box and vocal cords. We had to travel 1 hour one way to have these laser surgerys done every 2 months… They gradually slowed down and she has been in “remission” since 2007. I have to always look for the “signs” and know this can come back at any time. It is so hard watching anyone let alone your child go through something like this. I wish everyone the best and I am so glad to see this be acknowledged.
THE DOCTORS CAN’T FIND A DIAGNOSIS, TESTING AFTER TESTING, SURGERY AFTER SURGERY AND NOTHING COMING BACK. HE IS NOW TRANSFERRED TO CHILDRENS HOSPITAL LOS ANGELES. PLEASE READ THIS STORY, IT’S TOUCHING AND INSPIRING LIVES EVERYWHERE.
Thank for your sharing this page and information about Kody! Hoping someone reads your story and is able to help! Keeping Kody & those who love him in our thoughts and prayers!