On The Cover: John "Gungie" Rivera

John Gungie Rivera is a legend in the music industry. From being a DJ to a songwriter and promoter, John has done it all. The role he is most proud of, though, is leading the crusade to helping find a cure for Diffuse Intrinsic Pontine Glioma (D.I.P.G.), the disease that took the life of his six year-old son, Cristian. John spoke with Celebrity Parents about The Cristian Rivera Foundation, the 501 c3 non-profit organization he started to help raise funds and create awareness about D.I.P.G., and how his son’s legacy continues to inspire him today.


Photos: Gabbeli Photography

John, I remember you from back in the day when you used to DJ at in NYC.
Yes, I started out as a DJ. Then I became a record producer, a songwriter, a remixer, and then I broke into the promotions game. I started promoting clubs and concerts. I opened a label with Sony Music, and now I’m a co-Founder in Victory Multimedia, a PR marketing firm. I’m also the Founder of the Cristian Rivera Foundation, which is a non-profit I started for my son.

Let’s talk about Cristian.
Cristian was very close to me. He would be 8 years-old now. He was diagnosed with Diffuse Intrinsic Pontine Glioma, or D.I.P.G. at the age of 4. It’s an inoperable brain stem cancer. He lived with it for 2 years, 2 days, 18 hours and 36 minutes.

I am so, so sorry for the loss of your child.
The last five months of his life were tough. He couldn’t walk, talk, or breathe. As months went by, he lost different functions. His heart was beating 217 beats per minute; for the average person, it beats about 70 beats per minute. Pontine Glioma attacks all of the organs. There are 200 cases diagnosed in North America a year and there are no survivors. The median life span, once diagnosed, is 3-9 months.


How did you know something was wrong with Cristian?
He had a weakness in his right hand and his right foot. He was falling a lot when I would play sports with him. I went to his school, and I spoke to his teachers. Cristian was right-handed, but they said that he was starting to write with his left hand. My grandfather said to me that he noticed something was wrong with Cristian, too. We took him to see some doctors, and they started running developmental tests. We did an MRI at Cornell Medical Center, and that’s when we found out that he had it. 

And there’s no rhyme or reason why it happened to your son.
No. There’s no common denominator.

How have you coped with it all?
I just coped. I have another son, John Christopher, who is 19. I have my career. I just keep moving forward.

You’re honoring his legacy with the Cristian Rivera Foundation.
That’s one of the main reasons why I do cope. I keep hoping to bring closure to this. I think we will find a cure in my lifetime, which is exciting. I hope that the foundation plays a part in that, and we already are, in creating awareness about the disease. I’m a co-founder in a promotions and marketing firm, so my company has been getting the word out. A lot of the events that we do are linked to the Foundation.

From being in Cristian’s room, his love for Thomas the Tank Engine is very apparent.
Since he was very young, he would collect the trains. He bought all the current Thomas trains. But he wasn’t satisfied with that. He would Google the original trains, from the 50’s and 60’s, and he would go on eBay and find them. He would never bid on them, though; he would do a Buy It Now! [laughs] Some months, we would spend well over $1000 on trains. He would buy them all. He was missing two rare trains, and I’m happy that he got the trains before he passed. He knew the names of every current and every past train. I would take him to FAO Schwartz or Toys R Us, and parents would be amazed that he knew the names of all the trains, beyond the most popular ones.


What else would you want people to know?
All I can say is that D.I.P.G. is a horrible illness that affects children between the ages of 1-9. You don’t want to see children suffer. It’s not the normal evolution of life for parents to bury their children. It’s not supposed to happen. I don’t want to see children suffer, and with this disease, they do.

 
Switching gears slightly, let’s talk about some of your current projects.
We’re doing a concert at the Lehman Center for the Performing Arts in the Bronx. A portion of the proceeds will go to the Cristian Rivera Foundation. And the Foundation has a great list of committee members, such as Jellybean Benitez, Vic Latino, Lil Louie Vega, Anthony Mason, Luis Guzman and Funkmaster Flex, among many others,  who are working hard towards our goals.

Wow, some of those names are such a blast from the past! Ever miss the days of DJ-ing at L’Amour East, Paleds and 1018?
Absolutely! What’s better than those days when I was behind 4 turntables? Those were some of the best times of my life. When you have a creative passion about something and you do it, you’re happy. And you’re good at it. Right now, I’m taking what I’m good at to help promote awareness about this disease and find a cure. And we will.

For more info on The Cristian Rivera Foundation, please click here.

 

Comments

[Jennifer]

Thank you both for sharing your stories.

[jill darlling]

My son Wylie is 11. He was diagnosed at age 9 with DIPG. We are looking for answers also. May you find peace and answers for your son. Wylie is a fighter. We are trying to build his body back up after chemo. They do not have any answers. The answers will have to come from a more natural source. Healen 951 is a natural product out of Mexico which is a known tumor destroyer blocked by the FDA. We will start that soon. This disease is a bi-product of our environmental downfall. Wylies dad was raised in the most toxic water supply Anniston Alabama area of the united states and I from the second most toxic the hudson River area. PA now has a larger population for DIPG than any other area that I am awhere of. My heart aches for you and any other child who will and now suffers with this disease. I am a chiropractor and I do believe my son has survived this long because of the naturopathic approaches throughout this year and a half. I feel he has lost ground physically because of medicine. But without we would not still have a chance to fight. The answer I know will come from all forms of healing when we all come together and fight together as one healing entity. Thank you for sharing your story.
With Faith, Jill Darling

[Jose Cotto]

My baby boy Josia is six now. He was diagnosed on 8/26/11 with pontine glioma. We have hope and with faith that were science and technology end his mighty hands may continue his miracle. Please pray for Josia Noel Cotto. Josia current symptoms are drooling a mild lazy right eye. My number one friend and homi we're riding to the end and beyond. 917-435-6447 jose.