By Michele DeLuca
Niagara Gazette — To really see how you feel about medical marijuana, it would help to meet Tony Tallarico.
He’s 9 years old and just a beautiful kid with dark eyes and dark hair. I met him the other day in his Packard Road home and as his mom and I talked, he sat in his wheelchair in the middle of his family’s small living room turning his head left and right, his eyes casting about as is he were searching for something.
Tony has never walked or talked and is unable to do anything for himself. But, his parents, Mary and Dominick, take delight in all the subtle nuances of his personality. His little triumphs are hard won but definable including eye contact, communication through noises he makes and the occasional gleam in the eye when his he appears to be teasing his little brother.
All of these tiny achievements are regularly wiped away by the constant seizures that leave him drained and exhausted for days. Last week a horrible four-hour seizure landed him in the emergency room at Children’s Hospital. He had another seizure yesterday. Every time it happens, his mom said, it’s devastating.
Mary believes that a serum derived from medical marijuana might restore some of her son’s childhood, stolen at birth by a severe form of epilepsy called Lennox-Gastaut Syndrome.
The Tallaricos and other families like them, have pinned their hopes on a bio-engineered strain of medical marijuana now legal in Colorado and California, that appears to calm the seizures and give such children an opportunity for a more normal life.
A little girl in Denver named Charlotte seems to be proving such miracles are possible. Her story of how the drug cured her hundreds of seizures per day, is providing hope to desperate families, many of whom are moving to Colorado to take advantage of a strain of marijuana named for her called “Charlotte’s Web.” Her family believes that the serum, culled from the plant and called cannabinoid, or CBD, has restored Charlotte’s life.
“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.
Maziarz said that the matter is gaining support in the senate. “Beyond a reasonable doubt, this does work for children with epilepsy, certain MS patients and end of life patients,” he said of medical marijuana, but added it was important to note that he and the other senators are very much opposed to the legalization of marijuana for recreational use. He noted Wednesday that some legislation would be likely written, after negotiations between the senate, the assembly and Governor Andrew Cuomo, who recently spoke out in support of limited medical marijuana legislation.
There is a public hearing the matter planned for Monday in Cheektowaga (See box for information or visit www.compassionatecareny.org.)
In addition, Williams has created two videos which tell the stories of Tommy and Tony, locatable through a search of each boy’s name on YouTube. Both families are urging people to contact their state senators plead for legalization of medical marijuana in New York state.
Deep within this controversy, the parents of disabled children are hoping beyond hope for relief for their children. If the seizures can be stopped or tamed, perhaps some children can move out of their wheelchairs, learn to feed themselves, even walk. Tommy’s dad says “the possibilities are kind of endless.”
Without medical marijuana, the future is far more dire for these children and Williams said doctors are not optimistic about Tommy’s future, noting, “We were told at any time that he could have a seizure that could leave him brain dead, or even kill him.”
I don’t wonder how the naysayers in the senate would vote if Tommy or Tony was one of their kids. And I’m certain that with a little thoughtfulness they can provide hope to kids and others who need marijuana while protecting the lives of those who don’t.
IF YOU GO • WHAT: Public forum on legalizing medical marijuana • WHEN: 6:30 p.m. Monday • WHERE: Hilton Garden Inn Buffalo Airport, 4201 Genesee St., Cheektowaga • FOR MORE INFO: Contact Julie at 347-781-5435 or email: email@example.com.
Contact Michele DeLuca at 282-2311, ext. 2263.