Medical marijuana would be ‘life-changing’ for 5-year-old with seizures, says mom

OCEAN SPRINGS, Miss. (WLOX) - As the conversation about medical marijuana in Mississippi continues in Jackson, residents throughout the state continue to push for it to be legalized to help those suffering from various illnesses.

For five-year-old Avalyn May, it could be life-changing, said her mother Allie Byrd.

Byrd has been sharing her family’s story about Avalyn’s medical condition in the hopes that it will open more people’s eyes to the difference between a medical marijuana program and one that is recreational.

Since Avalyn May was two, she has suffered daily seizures.

“In 2018, I just knew something was off with her. She would be sleeping and then all of a sudden start projectile vomiting out of nowhere. That happened for a couple of months before we really knew something serious was going on,” wrote Byrd in a Facebook post that has since been shared nearly 400 times.

Shortly after, Avalyn May was diagnosed with a rare genetic brain disorder called STXBP1, which requires her to take 16 pills a day to control her epilepsy.

“It’s really rare, like 800 kids in the whole world have it,” Byrd told WLOX.

She elaborated more on the Facebook post: “When she got this diagnosis, she quickly became nonverbal. Before the seizures first started, she spoke just as well as anyone her age, but all of a sudden she couldn’t speak at all. I had to quit my job to take care of her.”

“It was OK for a little while. We tried a few medications, and then her seizures started to get worse. Over the last three years, we have tried at least 20 seizure medications, maybe more. It’s been rough. Putting your kid on so many different medications can completely change them. She would often just cry all day, and we’d have no idea what to do. The medications caused her to literally hurt herself and others. She was crawling out of her skin.”

In addition, those medications have horrible side effects.

“All these seizure medications cause anxiety, constipation, mood swings,” said Byrd.

Currently, Avalyn May is on six different medications each day.

“The longest she’s been without a seizure is 5 months, but on average, she has one a week.”

In an effort to ease the seizures and the enduring side effects that come along with the medication, Byrd began talking with other parents who have children with this disorder.

“I’m in this group with all of these parents who have children with the same genetic disorder as my child. I’ve become close with someone who has a child with the same disorder, and after doing research on how THC can help treat her child, she moved her family to Colorado. With the help of doctors and specialists, they have almost entirely eliminated her child’s seizures using THC, except for occasional monthly flareups,” she explained on Facebook. “While she used to be on several seizure medications, she is now on zero.”

She continued: “Some people might think it’s crazy to give your child marijuana. Before I knew of its medical benefits, I did too. But the levels of THC in the oil given to children is tailored for its exact medical purpose, not to get high.”

She knows medical marijuana won’t be a miracle cure but after years of struggling, she and Avalyn are desperate for relief.

“And once I researched it and reached out to other parents who have used it on the same-aged children as Avalyn, that’s all it had to do to convince me,” she told WLOX. “If it helped and stopped the seizures, let’s do it.”

Mississippi voters approved medical marijuana in 2020.

“When it said it was going to pass, I said, ‘Yes, please.’ You know, this could do wonders because it could do wonders, because I don’t want to have to move,” said Byrd.

Then, the state Supreme Court overturned the vote because of a procedural issue.

“We were crushed,” wrote Byrd. “I know several people whose lives have been changed by medical marijuana, people with the same and similar conditions to Avalyn. If it can help my daughter, and we could get her off all the medications changing her behavior and destroying her moods, our lives would undoubtedly change for the better.”

Now, as Gov. Tate Reeves and the legislature continue to haggle over the final bill and how much marijuana patients should be allowed to have, Byrd is keeping her eyes on the future. It’s a future that, hopefully, will mean less seizures for Avalyn.

“It would be life-changing if we were able to have that pass,” Byrd said. “But, I do know that I would rather her be on something that doesn’t have the side-effects that seizure meds do. I can’t wait to see what’s she’s like without medication. I don’t even remember what my child was like before being on all these seizure meds.”

In the meantime, the stress and the worry continue.

Byrd wrote on Facebook: “We’re just tired. I’m tired. She’s tired. I would love for something to change so that she could be truly happy and not have to take all these medications. It’s just heartbreaking.”

Talking with WLOX, she said there’s nothing else she can do right now except hope that the bill passes quickly.

“We try to make the best of it. The first two years were awful. They were really hard. But, now, I just have to make light of it, because if I didn’t, I’d probably go insane,” she said.

If the bill doesn’t pass, Byrd said her family will do whatever it takes to help Avalyn, even if that means leaving the Magnolia State.

“If Mississippi doesn’t pass a new medical marijuana program, we have considered moving to Florida where it is legal. We really don’t want to move because our whole family is close by, and their love and support is invaluable. It would break our hearts to leave, but if it would help our daughter, she comes first,” wrote Byrd.

As it stands now, the legislature’s program would allows children under the age of 18 to receive a medical marijuana card through a guardian and with the recommendation of a doctor.

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