When Asia Atwater was 20 months old she started having grand mal, or tonic-clonic, seizures — the kind that causes full-body convulsions and a loss of consciousness.
Five years and many tests later, doctors found the culprit — a rare condition called 2q23.1 microdeletion syndrome. A small error in her DNA meant that she would have major developmental delays and could suffer from frequent seizures for the rest of her life.
Despite having tried three different types of medication, Asia, now 8, is still having seizures.
Her family is hoping that might change soon, as Asia is on the verge of getting approval to be one of a small number of patients in Utah to receive medicinal cannabis oil.
“We have high hopes that it’s going to help her quite a bit,” said Clint Atwater, Asia’s father. Clint and his wife, Season, of Provo, were part of a concerted effort by a coalition of Utah parents to get a bill passed through the legislature that would allow their children to try this medicine.
The Atwaters were thrilled and relieved to see the bill move quickly through the legislature and the governor’s office, the result of many hours spent by the Atwaters and other parents speaking one-on-one with state lawmakers to educate them about the medicine they’re seeking.
Clint Atwater said he understands the confusion and misunderstanding that surrounds medical cannabis, as his family went through a similar educational process before they decided this treatment was right for Asia.
When someone first suggested to him that medical marijuana could help his daughter, Clint thought it sounded pretty out-there.
“I didn’t know that it was an actual legitimate medicine that can help real medical issues,” Clint said. But he set out to learn more and as he researched the issue he realized it made a lot of sense.
“It’s weird because I feel like I’m a marijuana expert now,” Clint said, laughing. “But I’m an expert on the side of the medicinal value of cannabis. We don’t even like to use the word marijuana in our world, we use cannabis because it’s the scientific name.”
Clint said the key to gaining support for this medicine was educating people on what the actual product is.
Utah has approved the use of cannabis oil, a nonintoxicating derivative of the plant that Atwater said has shown great success in reducing seizure activity in patients.
After learning about its safety and efficacy, the Atwaters moved aggressively gain legal access to cannabis oil as an alternative to existing medications, which Clint said are far from ideal.
The existing medications that Asia has used to help reduce her seizure activity work well at first, but after what Clint calls the “honeymoon phase” the seizures come back.
The medications also have nasty side effects and are very addictive, the Atwaters said.
“If we wanted to take her off a medicine, we have to ween her off slowly,” said Season Atwater. Clint said that six months ago they took Asia off a medication that they said seemed to be causing her to go into fits of rage.
“For an entire week she did not sleep at all,” Clint said. “She was having total withdrawal, shaking and at night she would just be anxious. She couldn’t sit still and you just had to lay next to her in bed every single night.”
On top of all that, the Atwaters said these existing medications get you high.
“A lot of people don’t realize that,” Clint said. “These are barbiturates and stuff that gets you high, and that’s what they’re being prescribed legally by doctors. … Even if the [cannabis] oil that we’re talking about did get you high, it’s still safer and more affective and less harmful to the body. But it doesn’t get you high. … It’s an effective medicine that doesn’t get the kids high any more.”
Clint said that once they learned all of this, it seemed like a no-brainer that cannabis oil is something that should be legal and available to patients who could be helped by it.
He said all of Asia’s doctors have supported the idea, and that thinking seems to have taken over in the state legislature as well.
After coming off one of her medications, Clint said Asia hasn’t been experiencing as much fury as she was before. The Atwaters are hoping that once she’s taking the cannabis oil she can come off her other medication, which they suspect is causing her a bit of a mental “fogginess.”
Knowing exactly what is going on inside Asia’s head is a challenge for the Atwaters as she doesn’t talk much.
She’s a rambunctious 8-year-old, pedaling a special tricycle around outside her home and nearly keeping up with her younger brothers as they run and climb across every inch of the nearby playground.
Clint and Season take turns pushing Asia on a swing, their daughter letting out shrieks of laughter as the wind blows her hair back and forth.
Clint thinks there’s a lot more going on in Asia’s head than she’s able to articulate. The Atwaters believe Asia’s mental development is being delayed not only by the frequent seizure activity in her brain, but also from her medication.
She’s progressed a lot since coming off one of her medications, using more words and even calling classmates by name.
Clint said he knows there is still widespread misconceptions in their state concerning the product they’re seeking and what their goals are.
He said he is hopeful that those misunderstandings will continue to evaporate as more people are educated on the issue.
“We’re not trying to legalize marijuana in the state of Utah. We’re far from that,” Clint said. “We’re just concerned parents trying to get medicine for sick kids.”
To learn more about what the Atwaters are trying to do, visit hope4childrenwithepilepsy.com.
Provo family hopeful medical marijuana can stop daughter's seizures
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