Pubdate: Sun, 22 Sep 2013
Source: Star-News (Wilmington, NC)
Copyright: 2013 Wilmington Morning Star
Author: Molly Parker


North Carolina parents of children who suffer severe seizures are
lining up for access to and pushing for legalization of medical
marijuana where it's not already allowed.

They want people to know they're not radicals. And they're not going
rogue. They are searching for options.

They freely admit they are desperate parents staring down nightmares
with their children, having watched them develop early skills only to
lose them at the hands of numerous seizures, only to have tried
cocktails of medications with debilitating side effects and watch them
not work.

They want the option legal in this state to try medical marijuana.
They want it so they aren't forced to uproot and move to another state
where it's legal, where there's been early success in treating seizure

For children, the cannabis is taken orally and not

In North Carolina, these parents are at the forefront of what could
become a divisive, emotional debate in the General Assembly - if it
ever gets that far.

They are teachers and government workers and stay-at-home moms. They
come from all walks of life and all parts of the state. Most
important, they are parents first. As Annetta Saggese, of Wilmington,
put it, "For us, this is our child, so of course you'll do anything
within your means for your child."

They are a relatively small group, connected by a Facebook page. Some
parents opted not to be interviewed for this story because of the
controversy that exists around medical marijuana. But three families
chose to speak out. These are their stories.


She's from New Jersey; he's from New York. But as fate would have it,
Annetta and Matt Saggese met in San Diego, where both had applied to
teach at a charter school.

"In the middle of my interview, she interrupted it," he said. "She was
the next interview. We both got hired. Happily ever after."

After some time out west, the two decided they wanted to come back
east, but not to their former homes. So they settled on Wilmington.
"This is the San Diego of the East Coast if you ask us," he said.

They are both teachers here now, Annetta at a small private school and
Matt at a public alternative school.

Just over four years ago, they welcomed home a beautiful baby girl
named Annetta, like her mom, but affectionately called Netta.

"When she was first born she was incredibly healthy, no issues at
all," Mom said. "At about 6 weeks Matt came in and noticed her doing a
rapid blinking thing. We thought it was maybe a bug bite. We tried to
cool it down with a wet towel and ice packs."

The problem went away for a brief while but then returned.

"About a week later I started recognizing when she was breast-feeding
she was having episodes. It was clear it was not normal," Annetta said.

They took their baby to the pediatrician, and seizures were confirmed.
Netta was placed in an ambulance, and the family followed to Chapel
Hill for a rigorous bout of testing, including lumbar punctures, MRIs
and a full body skeletal X-ray.

"It was the biggest shock to our world to get in the car and chase the
ambulance," Matt said.

That was October 2009, they recalled, on Halloween  Netta's first
Halloween in the hospital. "But not her last Halloween in the
hospital," her mom said.

Netta turned 4 in late August but functions at the level of an 8- to
10-month-old. She doesn't speak, though she can sign a few words,
including "more" and "finished."

She's been on a cocktail of medications, some that have worked, some
that haven't. All have had drastic side effects. One prevented her
from sweating. She was placed on a soy-based diet only to find she had
a severe allergic reaction to soy. A drug she's on now warns of
peripheral vision loss.

"If we've considered giving her medicine that could make her blind,"
Matt said, "or removing part of her brain," Annetta added, then why
not try medicinal marijuana, they've concluded.

A big part of the "why not" is it's not legal in North Carolina, even
though it's been used with limited success treating other children
with conditions similar to Netta's in other states.

While some parents proclaim they'll up and move if they have to, the
Saggeses say it's not that simple. They have day care here through
Easter Seals where therapists are trained to teach Netta. They have
friends and a support system and jobs. It's not so easy to uproot,
especially with a disabled child. They don't think they should have to

"If somebody had some sort of illness and the only treatment was grape
juice, and the government said, 'No, you can't give that child grape
juice because you can use it to make wine,' they are two totally
different things. So with the high CBD, low to virtually no THC, it's
like grape juice," Matt said.

Tetrahydrocannabinol, or THC, is the component of marijuana that's
psychoactive, while cannabidiol, or CBD, has been shown to have
medical qualities.

"Anybody that would take it to get high, it would be a waste of time,"
he said.

Annetta and Matt make a decisively strong couple. They're
well-educated, well-spoken teachers who aren't afraid to ask questions
and demand the best for Netta. But tears came as Annetta described the
plight of her daughter. "It's OK," she said. "We're used to crying."

This year, Netta has made some big gains, she said, and for that they
are thankful.

"We've seen great change," Annetta said. "When she lost everything, it
was easily the hardest thing we've ever gone through as individuals or
as a couple."

Because they don't know the prognosis of their child's illness, they
take each day as it comes.

"Typical developing kids have milestones," Matt said. "Netta has what
we've coined 'inch-stones.' Any little progress we celebrate. What
she's doing right now is pretty impressive."

Matt held his daughter on the floor as Netta sucked from a juice box.
A little later, she giggled as he tickled her.

"She wouldn't laugh for like two- and-a-half years," Annetta said. "At
five months she lost all of her skills to the point she was weaker
than the day she was born."


Liz Gorman, of North Raleigh, is a stay-at-home mom, the owner of a
large, well-decorated home in an affluent neighborhood, and from a
family with political ties. Gorman freely admits she's an unlikely
candidate to be at the forefront of the medical marijuana debate.

"I'm a Republican. ... I'm a conservative person politically," she

But she's a parent above all else, and as she put it: "We're

The family is on a waiting list for a marijuana grower in Colorado
that produces a specific strain that has shown success in other states
in treating children with uncontrollable seizures who haven't
responded to more mainstream medications

She'll move to Colorado - where it's legal - if she has to, and leave
her husband here.

But she's hopeful that lawmakers will hear this story - and will hear
the pleas of parents like her - and make medical marijuana use legal
in North Carolina, at least for children.

"This isn't about trying to legalize for recreational use. It isn't
about trying to change our culture in North Carolina," Gorman said.
"It's about trying to make a medical treatment that has shown promise
in other children (legal)."

Their daughter, Madeline, is 6 years old, but because of catastrophic
epilepsy she functions at about 11/2 years old.

She has trouble walking and talking.

She recently had brain surgery, which helped slow her seizures. Before
that, she would have about 300 to 400 a day, Gorman said, or seven to
eight seizure "clusters" lasting up to 40 minutes each.

The so-called large tonic seizures were the worst.

Madeline would stop breathing, make a horrible shrieking noise, lose
control of her bowels, and then become atonic, or "out of it," for
three to four minutes with her eyes fixed upward and her little body

That was happening three to five times a day before a recent risky
brain surgery.

The surgery wasn't expected to cure Madeline of her seizures, just
make them less violent - she was slamming into the floor - but it has
granted something of a reprieve. Still, Gorman expects them to return.
And if they do, she's prepared to uproot her life.

"I would run to Colorado right now if the surgery we just did hadn't
been as successful as it has," she said.

Her daughter, whom she calls Maddie, has tried a string of seizure
drugs and regimens: Keppra, Prednisolone, Vigabatrin, Topomax,
Zonegran, Lamictal, Vimpat, ACTH, Clonazepam, the Ketogenic Diet, and

Madeline was diagnosed with leukemia at 11 months old. Chemotherapy
rid her daughter of cancer, Gorman said, but may have been the root
cause of a lifetime of seizures.

The advocate in Gorman is poised - and pointed with her

She ticks off studies showing that public opinion has warmed to the
legalization of medical marijuana in North Carolina.

But the mother in her wiped tears from her eyes as she explained that
even the horror of watching her baby battle cancer pales in comparison
to the epilepsy.

"Cancer was really awful," she said.

"But the epilepsy is a much more difficult battle to watch. My
daughter was bright and was speaking normally and this amazing,
curious being. And she lost all of that," she said.


When it's said that medical marijuana for children is risky, with
unknown side effects, Beth Elliott points out all the side effects of
traditional treatments that have taken a lifetime's toll on her little
boy's body.

Her 5-year-old son, Gage, as a result of his numerous anti-seizure
medications, has suffered kidney stones six times, urinary retention,
insomnia, severe lethargy, rashes, heart palpitations, enlarged heart,
loss of appetite leading to a feeding tube, nonstop crying, liver
issues, urinary tract infections, inability to sweat, high blood
pressure and many other problems.

Gage, who lives with his family in Roper, a small town in the
northeastern part of the state, had his first seizure at 6 months old
and has been having them every day since then.

The family has tried countless medications and a special diet to try
to help control his seizures.

"Nothing has helped," his mom said.

She hopes marijuana is the answer - and wants it legal in North

"Something that has shown and proven medical benefits with use and
something that has changed the lives of so many for the better is not
available to my son because of the state we live in," she said via

Elliott said her son has maxed out on the medications that he is now
on and options for medicine he hasn't tried are limited. She has
researched "day in and day out," scouring the Internet and Facebook
groups for a new treatment that could not only control the seizures
but also keep him from his oft-comatose state and give him his
appetite back.

"I found the answer to what I had been looking for when I came across
an article about CBD," she said.

But she discovered that though some in the country have access to the
relatively new treatment, her son cannot because of state law.

"That infuriates me!!!" she wrote.

Elliott said the family is contemplating moving to another state, but
"right now it's not financially or physically possible."

"We will do anything to give Gage the opportunity to try CBD, and I am
more than happy to share our story to help educate others on this
subject," she said.
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