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Tatyana “Tuffy” Rivera and her parents, Ricardo and Jennifer, are at the fore of the New Jersey movement to continue working for safe access to cannabis. “Tuffy” used to take a combination of twenty five pharmaceuticals to treat Lennox-Gastaut Syndrome, a rare form of epilepsy; now that she is registered with New Jersey Compassionate Use Medical Marijuana program, she is down to only two prescription medications. She is taking a high CBD/low THC combination of cannabis, which her father, Ricardo, extracts and delivers in either liquid or lozenge form.
According to The National Institute of Health, Tuffy’s struggle with the rare form of epilepsy is painful and very dangerous:
“Lennox-Gastaut syndrome is a form of severe epilepsy that begins in childhood. It is characterized by multiple types of seizures and intellectual disability. People with Lennox-Gastaut syndrome begin having frequent seizures in early childhood, usually between ages 3 and 5. More than three-quarters of affected individuals have tonic seizures, which cause the muscles to stiffen (contract) uncontrollably. These seizures occur most often during sleep. Also common are atypical absence seizures, which cause a partial or complete loss of consciousness. Additionally, many affected individuals have drop attacks, which are sudden episodes of weak muscle tone. Drop attacks can result in falls that cause serious or life-threatening injuries.”
Tuffy and her family endured over 300 seizures a day, including 25-30 grand mal seizures starting from when she was a mere ten months old. “A grand mal seizure — also known as a generalized tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It’s the type of seizure most people picture when they think about seizures in general,” according to the Mayo Clinic. Upon visiting Tuffy’s Fight Foundation’s Facebook page, one can watch what some of these seizures do to her. Be forewarned, it is a very hard video to watch.
“With so many seizures, my daughter was at high risk of Sudden Unexpected Death in Epilepsy. Doctors would tell us that Tuffy would have a life span of 9 years,” Ricardo tells us. Tuffy is now ten years old.
As a result of the devastating seizures she has suffered, Tuffy is nonverbal and diagnosed as autistic. She was not able to function minimally on the heavy load of the many prescriptions she was previously taking. Now that she has been a registered patient in New Jersey and has a recommendation for cannabis provided by an Alternative Treatment Center (ATC), Tuffy’s seizures have been reduced by 90% and she can sometimes go a few blessed weeks without seizuring. She is more interactive with people, feeds herself, and gets herself dressed. She smiles and likes to run back and forth in her home trying to catch bubbles, which her mother rains down on her while the family laughs in joy. While she still has many challenges, Tuffy is a world away from where she used to be prior to medicating with cannabis.
Still, Tuffy’s parents have struggled with one of the most restrictive programs in the country. It took a year and a half to convince three doctors that she needed to have access to cannabis. Many physicians weren’t on board, so, “We brought the education to them,” Ricardo, who happens to be a Certified Surgical Technologist, says firmly. Though the program could use improvement especially by allowing home cultivation, Ricardo concedes it is better to have state protection and the support of his fellow tri-state and national activists like Richard Tamaccio (NA Poe), Chris Goldstein, and Vanessa Waltz, the latter with whom he worked to advocate adding autism and addiction as qualifying conditions for New Jersey’s medical cannabis program. He also works with the Coalition for Medical Marijuana New Jersey to advocate for more qualifying conditions. Further, Ricardo has worked with NJ Freeholder Carmen Rodriguez and Nilsa Cruz, a 5th District Senator, to allow for the administration of medication to registered students in schools statewide. In addition to advocating on behalf of his own child, Ricardo also has in mind and heart all the citizens of New Jersey who could benefit from cannabis. Tuffy’s Fight (Cannabis for Epilepsy) Foundation was founded to help educate the public about Tuffy “and for those suffering from serious and painful medical conditions (who) must have access to every option available to relieve their suffering.”
The foundation organizes an annual backpack drive for children in need in Camden, NJ, as well as a holiday toy drive in November. Ricardo travels as much as he can to statehouses and city council meetings in Camden, all while he and Jennifer raise Tuffy in New Jersey. To provide for his family while simultaneously advocating for patients and reforming drug policies, Ricardo works 12 hour shifts at a Camden County hospital three days a week, but does not pay himself as the Executive Director of Tuffy’s Fight. The organization needs donations from concerned and generous citizens to function and for Ricardo to pay for things like gas, parking, and travel to the many places he is asked to educate and speak. To contribute, please consider donating here:
Both Ricardo and Jennifer grew up in the Philadelphia tri-state area the 80’s and 90’s during the crack epidemic, and watched it tear their community apart with overdoses and mass incarceration as a result of policies set forth that were neither compassionate nor sensible. As a result of this exposure to the Drug War, Ricardo also is aware that those who have hard drug addictions could benefit from using cannabis as an exit strategy that is non-toxic and life-enhancing. Ricardo’s sister, Matilde, unfortunately succumbed to heroin addiction and he laments that she did not have access to cannabis to help her heal. Ricardo has been working cannabis decriminalization in Camden, NJ for a little over a year. “The reason why I think it’s important is that we have to allow for opiate addicts to medicate without the fear of being thrown in jail for it. There’s a lot of literature and studies that show cannabis can relieve opiate withdrawal symptoms and is being used to help addicts wean off of opioids. Camden is the Mecca of heroin addiction in NJ and I have evidence that supports decriminalization would free up police resources and promote better police to community relations. This could help with solving more serious crimes.”
He’s also very concerned with the hard and nonsensical stance of US Attorney General Jeff Sessions on cannabis policy and wants to do anything he can to forward access to cannabis rather than roll back policies as Sessions seems bent on doing. “It worries me that he wants to make things worse even though the old policies are proven to be inhumane and do not work. How can he not see how cannabis relieves so much suffering? There’s something very wrong with him.”