Fairport doctor prescribes med marijuana for patients, can't help son

Fighting For Vincent

Imagine knowing of a drug that could save your child from a life-threatening medical condition, but being powerless to get it.

A Fairport physician is one of the few Rochester-area doctors eligible to get medical marijuana to his patients. Yet he can't give it to the person he most wants to: his son.

"It's a precarious position; I would do anything to help Vincent," Dr. Steven Ognibene said.

We met 10-year-old Vinnie on a sunny February day as he was about to go for a walk with his mom Corinna, brother Santino and service dog Tanner.

Vinnie is autistic and non-verbal. He lives life in a constant state of motion.

"If he's not swinging, he has to be walking or bouncing," Corinna said. "He's always moving."

Vinnie navigates his world with a language of his own. When he pumps his fists in the air, it's to show his excitement.

The day on which 13WHAM News dropped by was one of his good days.

"We go through every day not knowing if it's going to be a good day or a bad day," Dr. Ognibene said.

At 18 months old, Vinny began to suffer epileptic seizures, sometimes as many as 400 a day. As he's grown, those seizures are longer, less predictable and more violent.

"When he has a seizure, I go down with him," Corinna said. "He's lost his front teeth, had several head injuries, broken both arms - because he hit so many times."

Everything around their home is a potential danger.

"It's difficult watching him suffer on a daily basis, knowing there is something that could actually help him," Dr. Ognibene said.

That something is medical cannabis. New York approved the Compassionate Care Act more than two years ago allowing for the drug to be used for specific medical conditions, including epilepsy.

Every drug and drug/combination currently available to the Ognibenes so far hasn't worked to halt the seizures. Patients in other states have found that a component in medical marijuana does.

"I support it all the way," Corinna said. "You couldn't be in my shoes and watch my son and not be supportive."

Corinna is an emergency room nurse. Steve is a doctor who sees patients for colon issues, including cancer. Steve has taken the state-mandated course to certify that he qualifies to get his patients medical cannabis.

Yet the way the law works, he cannot use his expertise to help his son.

"If Vincent has an ear infection and there's none of his doctors around, I feel very comfortable prescribing an antibiotic," Dr. Ognibene said. "But medical cannabis is a very touchy subject. We're walking a very thin line from a medical/legal stand point."

Columbia Care is now dispensing Medical Marijuana at its Rochester pharmacy. But few doctors locally are on board to certify themselves and register patients. Those are necessary steps under state regulations. Patients must not only find registered doctors, but doctors in the field who treat their specific illness.

So many who have fought hard for it to be legal are still fighting for access.

"They've got billboards on how Rochester is a national leader in neuromedicine and I think it's time for them to step up and put their money where their mouth is," Dr. Ognibene said.

So far, 330 doctors have been certified across the state. But the New York Department of Health, which administers the program, does not intend to provide that list. Not even patients who are eligible and seeking a doctor can check it because their own physician might not be comfortable with the drug.

But the Ognibenes won't stop fighting for Vincent.

"Every minute that goes by is another minute that he could be living life to its fullest," Dr. Ognibene said.

They also fight because every minute that goes by can also bring the unthinkable.

'You're powerless and you're paralyzed in your fear," Corinna said. "When is it going to be the biggest one? Is he going to start breathing again?"

close video ad
Unmutetoggle ad audio on off