Parents Fight for Medical Marijuana in New York State

BUFFALO, N.Y. -- When Tommy Williams of Lockport was born, the doctor turned to his parents and said, "He's perfect." Tommy was 9 lbs, 6.5 oz. and perfectly healthy.

But four months later, while out for breakfast, he "jerked, and his head went down and hit the edge of the table," his dad Buc said. Tommy had experienced his first ever seizure.

Between then and now, he would have hundreds of thousands more.

Buc took videos of his son and showed the doctors. Tommy was almost immediately diagnosed with a rare epileptic disorder that causes near constant seizures. They've taken away his ability to talk or walk.

"We've seen him lose consciousness," his mother Patti said. "We've seen him turn blue. It's tough to watch."

Eight-year-old Anna Conte of Orchard Park has a similar epileptic disorder. hers is called Dravet Syndrome.

Spend just a couple minutes with Anna, and you immediately see her smile, laughter, and infectious love of life. What you don't notice is that Anna, too, experiences seizures, often more than 100 a day.

"At any given moment, she can have a seizure," Wendy Conte, Anna's mother, said.

The worse you wouldn't want to see. Anna's seizures can cause her to stop breathing. She's been rushed to the hospital more than 70 times.

Wendy recalled one particular trip to Children's Hospital in Buffalo.

"There were 13 people working on her, and I looked at my husband, and I said we're losing her today," Wendy said.

Despite the 16 medications that Anna takes every day, the seizures remain.

"You're ready at any given moment for it to be over, for it to be the end," Anna's Aunt Cindy McCormick said.

As these two children literally fight for their lives, their families are fighting state government. It all has to do with the treatment Anna and Tommy cannot receive.

"It's the name," Wendy said. "I think if it were called anything else there wouldn't even be an issue."

What it's called -- is marijuana.

Children with Dravet Syndrome and similar disorders have made remarkable recoveries using medical marijuana. One little girl named Charlotte Figi was featured in a CNN documentary.

Charlotte was having up to 300 severe seizures a week. They kept her from walking, talking or even eating. Then came the medical marijuana treatments. Now Charlotte is out on the playground, enjoying life like all the other kids.

"When you hear that, it sounds like a miracle drug," 2 On Your Side's Michael Wooten said to Wendy. "It is," she responded. "It absolutely is."

Wendy said there is a lot of misinformation out there when it comes to the proposed treatment for her daughter. This form of medical marijuana doesn't get the children high, because the THC in the plant is almost completely removed.

It's the Cannabidiol ingredient that helps treat the seizures.

Also, it's not smoked in a joint. Instead, the medicine is manufactured into a pill or an oil.

"Little bit of oil that you give under the tongue, and that's it," Buc said.

"To know that there is a medication that children are using and are being successful with, with very little to no side effects, that can save her life, I have to fight," Wendy said. "We have to fight for this law to be passed."

Wendy is referring to the Compassionate Care Act, which is pending before the state legislature. Year after year, similar bills to legalize medical marijuana have failed to pass.

While 21 states and the District of Columbia now allow and regulate medical marijuana, according to NORML, New York is not among them.

The proposal to do so here has failed multiple times in the State Senate.

The Conte and Williams families are running out of options. So both are now considering leaving their hometowns here in Western New York and moving to a place like Colorado where they can get medical marijuana for their children. They would become part of a growing group now known as marijuana refugees."

"Our daughter's life is in stake," Wendy said. "The medication she is on is not controlling her seizures. We can't sit back and accept that. We will move."

A year ago, the Colorado State Health Department had 45 children registered to receive medical marijuana. Now, that number has doubled to 90.

And the number will continue to rise, with hundreds of families planning such a move.

"We can't replace our child," Buc said. "We're going to do whatever it takes to at least give him the opportunity to try it."

Because, they say, they've tried everything else: experimental treatments, drugs from Europe, different therapies.

The table in Tommy's bedroom illustrates that. It's completely covered in myriad medications. Marijuana may be their last hope.

And the doctors treating Tommy and Anna are all for it. Anna's pediatrician told 2 On Your Side that she will prescribe medical marijuana as soon as it's legal. Tommy's neurosurgeon is also fully on board.

"We have not run into a doctor who has said no," Patti said. "They basically tell us our hands are tied."

But some doctors are skeptical, including Dr. Seth Ammerman.

"All medications may have side effects, may have long-term consequences," Dr. Ammerman said. "Unfortunately, with cannabinoids, we know very little about that. A parent is really flying by the seat of his or her pants by doing this."

When asked to respond to that argument, Wendy said she's not worried of the dangers, because she sees the improvement in other children taking the medical marijuana. And she says tests are being done.

For these families, time is the enemy. Anna's disorder is considered terminal. Tommy's doctors said he isn't expected to live past his teens.

"You think Anna's life is on the line in this debate," 2 On Your Side asked Wendy. "Absolutely," she responded.

The medical marijuana gives hope.

"If I can just get a dialogue with him some day, that would be all my prayers answered," Patti said.

Wendy put out this challenge to lawmakers.

"I invite any legislator, anyone who has an issue with the passing of the Compassionate Care Act," Wendy said. "Come spend a day with us and see what Anna's life is. I guarantee you they will be signing that bill to be passed."

The bill will be debated in the upcoming session, which begins in January. It's unclear if it will actually come to a vote in the State Senate.

The Assembly Committee on Health will host a hearing on medical marijuana Thursday at 10 a.m. at Buffalo Common Council Chambers. Both the Williams and Conte families will be speaking, along with other supporters.

Those who oppose the law will also speak. Some worry marijuana is a gateway drug, and legalizing it for medical purposes could lead to abuse.

Supporters say there are safeguards in place in the current medical marijuana proposal to minimize or even eliminate any abuse. For the Williams and Conte families, it's about giving these small children a chance at a better life.


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