OUR VIEW: Governor, please sign medical marijuana bill

OBSERVER-DISPATCH

Mackenzie Kulawy rests on the lap of her mother, Julie Kulawy, in their New York Mills home. Mackenzie suffers from Doose syndrome, a rare form of epilepsy. A bill that would speed accessibility of medical marijuana to critically ill patients like Mackenzie has been approved by the state Legislature, and only needs Gov. Cuomo's signature.

Twelve-year-old Mackenzie Kulawy of New York Mills might not have to wait until next year to get the help that could relieve the violent epileptic seizures that threaten her life. It’s up the Gov. Andrew Cuomo to sign into law legislation that can make that happen.

Please, governor. Sign the legislation. It’s the right thing to do.

This past week, the state Senate approved a bill sponsored by state Sen. Joseph Griffo, R-Rome, that would help certain critically ill patients obtain emergency access to medical marijuana. The bill has already passed in the Assembly, where it was co-sponsored by Assemblyman Anthony Brindisi, D-Utica.

Gov. Cuomo has already acted on behalf of needy patients when he signed New York's medical marijuana bill into law last July. It was the 23rd state to do so. But that program isn’t expected to be fully implemented until 2016 at the earliest.

That might not be soon enough for some. At least four children who might have benefited from this treatment have died since the law was approved.

Mackenzie developed a rare form of epilepsy — Doose Syndrome — when she was just 4 and suffers seizures daily. In April, she had to drop out of school. In addition, she must stick to a special diet and has to wear a helmet to prevent serious head injuries that could occur during a seizure.

Mackenzie’s grandmother, Patricia Reed, who retired to help care for her granddaughter, has explained that the brain needs to repair itself between seizures. But as Mackenzie gets older, that process takes longer.

Getting medical marijuana now could greatly help her chances of resuming a normal life. It has helped others with similar conditions. Mackenzie has tried other treatments with little success — only nasty side-effects.

Medical marijuana could be her last hope.

Griffo and Brindisi have been strong advocates for Mackenzie and others like her who so desperately need help now. In April, Brindisi invited her to hold a press conference at the Capitol in Albany to discuss her condition.

“Living with epilepsy is very difficult due to the amount of seizures I have per day and the different types,” she said. “The drop seizures make me drop where ever I am. If I am standing near the counter, I usually hit my face. I have cracked my front teeth five times already this year. If I am on stairs I can fall down the stairs.

“During a jerk seizure if I am sitting at a table, I can also hit my face. I have to wear an infielder’s mask to protect myself when I am having a lot of these seizures. I don’t like to, it makes me different and people stare. This hurts my feelings.

“I also wear (a) helmet all the time, and I wish I didn’t have to wear this one, either.”

Gov. Cuomo is certainly not a man without compassion. He knows life-threatening issues up close. When his longtime girlfriend, TV host Sandra Lee, was diagnosed with breast cancer in May, the governor was understandably devastated. He quickly put his hectic political life on the back burner and took personal time to be with her through the surgery and recovery. Nothing was more important.

Nor should it be.

Surely the governor can empathize with families whose children might not live to see another day — especially when there is a treatment that could possibly lessen or end their suffering.

Please, governor, sign this legislation. This isn’t about politics. It’s about a little girl and others like her who want a chance at a normal life.

Help them.