Niagara Gazette —
“She was the first to try to try the CBD oil,” said Mark Williams of Lockport, whose son Tommy, 8, also suffers from Lennox-Gastaut and has as many as 100 seizures a day. “She was having 200 seizures a day and now she can run, play, talk, dance. It’s been a miracle.”
While some doctors warn that there is no proof Charlotte’s Web is effective, Williams said 86 percent of the kids who take the medication see some improvement. (See www.theroc.us for more information.)
The serum, typically devoid of the drug from the plant that gets people “high,” is only available to residents in Colorado and California, so both the Williams and the Tallaricos are considering moving to Colorado, although moving would completely disrupt their families.
“My wife carries our insurance through her job,” said Williams who owns a video production company and whose wife, Patti, works at the Seneca Niagara Casino. “She’d lose her pension and lose her job,” he said. “We’d be going down there with nothing.”
Some of those against legalizing medical marijuana worry use of the plant could lead to other addictions, but the anti-seizure drugs the two Niagara boys are on are far more dangerous, the parents say. Mary was panicked by a light rash on her son’s body recently, because a potential side effect of one of three anti-seizure drugs he takes, is a fatal rash. “I am afraid everyday to give Tony his medication,” she told me.
Williams joined other parents from an organization called Compassionate Care NY, who traveled to Albany Tuesday in an effort to ask state senators to pass a bill which, in some form, has already been approved more than once by the assembly. The meetings, set up by Sen. George Maziarz, included Sen. Patrick Gallavin of Elma and Sen. Thomas W. Libous of Binghamton and several other senators.