Texas: Father Pleads For Medical Marijuana Legislation To Better Son's Life

Jacob Redmond

Well-Known Member
An El Paso father is pleading for Texas lawmakers to give medical marijuana legislation a second look, in hopes of helping improve his son’s quality of life.

The family’s neurologist suggested the parents try medical marijuana, but they haven’t been able to since it’s not legal yet.

Ethan Aguirre, 4, has an extremely rare genetic mutation that has caused severe seizures since he was 10-months-old.

“It’s been scary. Some of the seizures that he has, it’s like they last forever and the one he turned really blue,” said Ethan’s father Alex Aguirre.

Ethan has the SCN 2-A mutation, and at his worst was having up to 100 seizures every day.

“They were really bad. They were the tense ones where his body tenses up and he just looks around so we had to give him medication,” said Aguirre.

He was prescribed powerful medications with horrific side effects. One medication made his entire body swell, another could have caused him to lose his peripheral vision. They even tried a special diet, but Ethan was still having an average of 30 seizures a day.

“He was still having them so they took him off that and put them on Keppra, and we took him off Keppra the next day because he started biting his hands started tearing the flesh off of his fingers,” Aguirre said.
Aguirre said this was because of side effects like anger and rage.

“Those were some really bad medications and right now the one we have him on his Onfi,” said Aguirre.
Aguirre said Onfi just makes Ethan drowsy, causing him to sleep more than he should. His neurologist suggested they try Charlotte’s Web, a marijuana extract used for medicinal purposes. The doctor even suggested the Aguirres move to Colorado.

“We love El Paso and we love living here and we have our whole entire family here,” Aguirre said.
But, moving out of state has crossed his mind. Charlotte’s Web became famous after a 2013 CNN documentary that showed a reduction in an 8-year-old’s epileptic seizures.

“It’s been helping with those cases, and giving it to my son with almost a similar genetic mutation as Charlotte had I would expect to see positive results,” Aguirre said.

Companion bills in the Texas Legislature would support limited legalization of CBD oil, an extract that helps control seizures, something Aguirre believes there are many misconceptions about.

“They think that he's going to smoke a joint or something. No, you get the oil and put it under his tongue and there's only trace amounts of THC. My son won’t feel the effects of the marijuana, only the CBD oil,” Aguirre said.

So little THC that some seizures patients say a greater ratio of THC to CBD is needed to be effective.

Senate Bill 339, proposed by Tyler Republican Sen. Kevin Eltife. cleared the public health committee, and is currently in the scheduling committee.

Although Aguirre doesn't know if this would cure his son’s seizures, he said it’s a step in the right direction.

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