FORTH WORTH, Tex. - In many ways, Kadience Mulanax is like any other 7-year-old girl who loves t-ball and cell-phone video games.
There is a part of her life her parents wish they could change, for her sake. "I don’t know that she’s ever had a time where she’s been completely seizure-free," says her mother, Laci.
Kadience has a genetic disorder called Tuberous Sclerosis, or "TS." It affects about one in every 4,000 people, says Dr. M. Scott Perry of Cook Children's Medical Center. He says it affects almost every single organ system and often leads to debilitating seizures.
"We did 28 days of counting and she had 90 -- 89, 90" in that time period, says dad Brooks. Her family's latest hope isn't pinned on pills or powders. It's cannabis oil.
"We’re trying to figure out how does it work for the treatment of seizures," Dr. Perry says.
The family is now driving regularly from Lubbock to Cook Children's in Fort Worth to take part in a cannabis oil trial for TS patients.
Dr. Perry is the trial's lead investigator.
"This is part of an FDA study," he says. "This is a little different from the hemp oils you’d get from the internet. This is a true pharmaceutical drug, meaning it's under a lot of scrutiny."
That scrutiny made the decision easy for Laci and Brooks Mulanax.
"I wasn’t ever of the mindset that 'Hey, you're giving your kid marijuana because that is not the case whatsoever,'" Brooks says.
The Mulanax family is one of five families currently receiving this trial at Cook Children's. The hospital says it has the ability to include up to five more families in the trial as well. In total, 210 patients in 40 medical centers worldwide will participate in the trial.
"What we’re seen so far in the studies we’ve done is that it does work," Dr. Perry says. "In the three trials they’ve released results on so far, the average [seizure] reduction was 40 percent."
This trial gives Dr. Perry hope. It gives the Mulanax family hope, too.
"We don’t hold her back. So if this is just another way we can normalize her life and growing up, we’re all about it," Brooks says.
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