Branden: F.I.R.E.S.

The Petro Family is one that I have been looking forward to meeting for some time. Renee Petro and I became friends and have been communicating by telephone and online, but we had yet to meet in person. Finally, Renee and I met when I drove to Tampa for the Canammom's first local chapter meeting. Renee is the co-founder of Cannamoms. Cannamoms recently was approved for their 501c3 status. These group of women/mother's are very excited about the opportunity of moving forward with their goals. Their mission is to provide awareness and education about obtaining access to medical cannabis for critically or chronically ill, medically-complex, and special needs children. And, I can attest to how tirelessly they all have been working towards getting the vital word spread about voting Yes on Amendment 2 this election.

Renee Petro seen giving Branden a natural alternative, but wishing she had the option to give her son what she believes he needs; cannabis oil with higher THC., Tampa, FL.

Renee Petro seen giving Branden a natural alternative, but wishing she had the option to give her son what she believes he needs; cannabis oil with higher THC., Tampa, FL.

On to Branden...

Later that evening I had the most wonderful first encounter with Branden. Not to cause to much excitement to Branden, Renee tried to sneak me in through the garage, but Branden was quick to know something was going on. He greeted me in the garage. He asked me my name.

Portrait of Branden at home. Tampa, FL  

Portrait of Branden at home. Tampa, FL

 

"Jennifer," I said.

He gave me a hug, and while looking up at me he said, "Jennifer." 

My heart melted a bit at that moment. "Yes, my name is Jennifer. Aren't you so sweet." 

Branden, then put his finger on my nose ring, and said, "What is that, a pimple?"

I laughed so hard. I could tell he was being funny. I said, "No, it's a nose ring."

"A nose ring, oh," he said. Then he pointed to it again and said the same thing. And we would both laugh. He would go on to ask me the same question periodically while I was there, just for a good giggle. Despite all the challenges that Branden is dealing with, he is still smart, charming, and very funny.

Branden Petro is 14 years old and suffers from a very rare condition named F.I.R.E.S., that stands for Febrile infection-related epilepsy syndrome. This condition is extremely rare, effecting 1 in 1,000,000. According to his mom Renne, there may be a couple hundred known cases by now. Not so long ago, there were only 35 known cases worldwide. A few months back there was an article about a little boy in Chicago that stated there were 100 known worldwide, but Branden's mom, Renee, says there are probably a couple hundred. She says the support group she belongs to has over 100 cases reported. There might even be more, but there could have been many prior cases not reported because doctors miss diagnosed, not knowing what F.I.R.E.S is. One thing is for sure, and that is that there is not enough information and no cure.  One common thread does exist between all known cases, and that is the onset. All the stories of these cases occur in very similar manners.  On the F.I.R.E.S. Children website there is a clear description, "Febrile infection-related epilepsy syndrome (FIRES) is a form of epilepsy that attacks children three to fifteen years old. It affects boys more often than girls.  A healthy child that has been ill in the last few days with a lingering fever goes into a state of continuous seizures (status). "At first tests show nothing wrong with the brain. Doctors often think it is encephalitis, but the pressure in the brain comes back normal. Children are often put into a coma to calm the seizures. FIRES is resistant to medications and treatments. Barbiturates and cooling may be helpful in the status stage. The seizures are non-focal (different starting points), making surgery useless."

Branden experiencing a short outburst while sitting at the table. Tampa, FL.  

Branden experiencing a short outburst while sitting at the table. Tampa, FL.

 

Renee in the early morning, sitting outside of Branden's room. Above Renee on the yellow sheet of paper, is a list of things for Branden to remember to do in the morning; wash his face, get dressed, take his meds, brush his teeth, and to write his name, address, and phone number. Tampa, FL.      

Renee in the early morning, sitting outside of Branden's room. Above Renee on the yellow sheet of paper, is a list of things for Branden to remember to do in the morning; wash his face, get dressed, take his meds, brush his teeth, and to write his name, address, and phone number. Tampa, FL.

 

 

 


"These seizures damage one's cognitive abilities in the brain, and in turn, effecting ones memory and sensory abilities. This can result in learning disabilities, behavioral disorders, physical challenges and possibly death. These children continue to have seizures throughout their lives, and are prescribed toxic medications to help with the frequency of their seizures."

Life as they had known changed for the Petro family in the summer of 2010, when Branden was eight years old. While visiting Renee's family in Israel, Branden went to his mom complaining that his neck was sore. She noticed he had a fever. The doctor assumed it was a virus and put Branden on antibiotics. Renee noticed over the next several days that Branden was not acting like his normal self, and her mother's instincts were right. On the 17th of July, Branden walked into the kitchen after taking a nap, and started talking to his mom. Within moments, he stopped speaking mid sentence. "His face washed over with a look of confusion, and his body arched forward and he started convulsing. I remember how my heart pounded in my chest as I knelt down to hold my child. He was having a seizure right before me, and I didn't know what to do to help him. I just held him to me hoping the seizure would pass, but it didn't."

They rushed him to the hospital. Branden was put through hours of testing, but the seizures would not stop. The doctors could not figure out what was happening. They had never experienced a case such as his. The doctors came to the conclusion that it must have been a virus. Perhaps, encephalitis (swelling of the brain.) "All I kept thinking was that my son was going to die, and I couldn't do anything to help him."

Branden was airlifted to a hospital in Germany to, hopefully, find help and answers. With the relentless seizures continuing, Branden was put into induced coma. He was fed various medications, including anti-epileptic medications. Branden then developed pneumonia and a high temperature of 105.

When Branden was finally lifted from a coma, he awoke seizing and hallucinating. Finally, after many tests were conducted, doctors came to the conclusion that his condition was F.I.R.E.S.

 

Video produced by Leafly, featuring Renee Petro)

The road that has followed since 2010 has been extremely difficult. The only solution the medical field has had to offer is to bounce from one pharmaceutical drug to another. None, of which have resulted in ending the suffering to his body and mind, and not remotely bringing her son back to the boy he once was. The same be told for everyone else I have shown and written about, and for all the stories that will follow because there hasn't been an end-all-cure for them. Instead, the pharmaceutical drugs have been harmful. Case in point with Branden; the side-effects produce hallucinations and cause suicidal thoughts.

Why does Renee fight for Cannabis for medicine? She fights for it because she took it upon herself to do the research. When no one else is looking for solutions to help you and your child who is suffering, as a mother you don't give up, or should I say- "You should never give up."

Renee knows you don't stop fighting. She sees Branden's suffering everyday. And, there are no options; watch the suffering or wait for death to come knocking on the door.

Once Renee discovered the medical benefits of cannabis, and how others were being saved from it, she began fighting for the cause. In 2014, Renee and Branden were also on the same sponsored trip to California that Annelise and Christina Clark, Jacel Delgadillo and Bruno Stillo. and Mariaha and Dahlia Barnhart were on. ( You may refer back to the stories I have covered on Christina Clark.) That is when under professional care, Branden was able to try cannabis. The results confirmed for Renee that cannabis was the answer to the possibility of gaining her son Branden back.

But, since that trip to California it has been a long road in the waiting game. "Unfortunately due to the state laws and political games our legislators would rather us illegally heal our children instead of legally healing our children."

Renee goes on to say, "This is a human rights issue and our rights have been violated far too long."

Renee also says, "The seizures aren't the problem the pharmaceuticals are, and if cannabis can give someone the chance to the best quality of life, then we intend to make that happen, and will do so one way or another."

In Branden's room he has a large collection of trophies. Before life had changed at the age of eight, Branden played soccer. During the years family and friends continue to gift Branden with a trophies to remind him how special he is., Tampa, FL.

In Branden's room he has a large collection of trophies. Before life had changed at the age of eight, Branden played soccer. During the years family and friends continue to gift Branden with a trophies to remind him how special he is., Tampa, FL.

TODAY

Branden was the first patient in his physicians practice to be recommended for the long awaited high CBD/ low THC, granted by the Compassionate Care Act of 2014, and he was the fifth-tenth person to be registered in the state of Florida. Their purchase was finally made on August 30, 2016; in a vape pen. 

It has been no surprise to Renee that the treatment has not been working; "Amendment 2 needs to pass, CBD isn't enough."

Renee with her son Branden sitting together in the early morning, outside his bedroom, talking about the day ahead. Tampa, FL.  

Renee with her son Branden sitting together in the early morning, outside his bedroom, talking about the day ahead. Tampa, FL.

 

FINAL THOUGHTS

As many of you start heading out to vote, I hope these stories are making an impact on you.

All I can say, is please vote yes on 2.

 

For more information about F.I.R.E.S. go to: http://www.rarefires.com

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        Taking Focus, INC.

 

 

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