Marijuana activist Nikki Allen Poe’s #SmokeDownPhilly video series continued this week, this time highlighting the deficient New Jersey medical marijuana program through the story of 8-year-old Camden resident Tatyana “Tuffy” Rivera.
At 10 months old, Tuffy was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy that caused upwards of 300 seizures a day at its worst. As a result of her disorder, Tuffy was left unable to speak or feed herself.
However, since last June, Tuffy’s father, Ricardo Rivera of South Jersey, has been administering medical cannabis to Tuffy in edible candy form. Since then, Rivera says, his daughter’s seizures have “decreased by about 90 percent.” Prior to that, the Riveras had been medicating Tuffy with dozens of different pharmaceuticals to little success.
“She was pretty much dying in front of us,” Rivera, who was recently honored by Jersey freeholders for his advocacy, says of his daughter’s condition. “We decided to try something that has a lot fewer side effects, or more mild ones.”
However, despite medical marijuana’s success with Tuffy, Rivera and his family have faced an uphill battle at the hands of Gov. Chris Christie’s continued hamstringing of the program. Now, the next phase in the battle is having Tuffy’s school allow her to medicate during the school day, all while dealing with the $500-per-ounce price point and limited dispensary system New Jersey currently runs.
“Her brain is so dependent on being able to get this that she seizes more in school than at home,” Rivera says.
As for Poe, Tuffy’s Fight is as much a massive failing of New Jersey’s medical marijuana system as it is a cautionary tale for us in Pennsylvania, where we’re currently mulling over a medical marijuana bill.
“Without a comprehensive medical marijuana program in place here, most patients and caregivers will face the same uphill battle as the Riveras,” Poe says. “I won’t let that happen here.”