FONDA, Iowa — Debilitating seizures stole her ability to walk and communicate and left a 25-year-old Fonda woman trapped in her own body.
Harli Kirkpatrick’s family did everything they could to help, but the varieties of prescriptions were only outnumbered by the repeated doctor’s visits.
Their frustration led them to an unconventional option, with unexpected results.
“What’s meaningful to Harli is that she has control of her life and that means having control of her body,” says Tami Mugler of Fonda.
Like all mothers Mugler had big dreams for her daughter, that all changed when Harli Kirkpatrick was just one-year-old.
“There are several genotypes Harli is deletion. The deletion genotype is the most common for Angelman’s Syndrome but also the most severe,” says Mugler.
Angelman’s Syndrome limits speech, delays physical development and causes debilitating seizures.
“She was sitting in her chair and her body was jerking and slamming from myoclonic episodes so frequently and so hard she pretty much wasn’t there she was existing,” says Mugler.
The heartbreaking episodes led Tami on a search for answers across the country.
Over the past 25 years Harli’s visited a dozen different doctors and specialists, altered her diet and tried multiple prescription drugs and supplements.
“As a parent you’re heartbroken because you know what these meds can do, you know what the side effects are,” says Mugler.
At times the medication seemed to work but eventually the seizures, sometimes up to 20 per day returned.
“There’s no words to watch your child lose her entire life because that’s what she did, she never smiled anymore, she never typed, she didn’t talk to me, she couldn’t tell me how she was feeling,” says Mugler.
Out of options Tami turned to Boris Shcharansky, CEO of Heartland Hemp in Des Moines.
“I facilitated them being able to get a quality tested, federally legal product and that’s what they wanted. They didn’t want to break any laws so I helped them do that,” says Shcharansky.
The product, CBD Hemp Oil starts in Europe, where the hemp plant is legally grown.
It’s then legally imported and concentrated in the United States.
One bottle, or about a one month’s supply, costs $370.00.
The end result contains 24 percent medicinal CBD and less than 1 percent THC, far below the amount needed to cause a high.
Harli takes 75 mg in the morning and 50 mg at night.
Within weeks of Harli taking the oil, Tami knew she made the right decision.
We followed Harli to physical therapy and watched as she had her first major break-through.
Harli was able to hold herself up on her hands in knees, something she has never done before.
Harli wasn’t done.
“I was very certain Harli would never have the opportunity to walk unassisted, Harli had other ideas,” says Mugler.
Harli is walking and climbing stairs, something she hasn’t done since she was in elementary school.
“That’s pretty exciting as a parent to see the advances that you had already written off as not going to happen. Harli is doing things not only that she’s never done before but never attempted before, because she didn’t have the control over her body she has right now,” says Mugler.
The oils even given Harli a voice back. Harli is now able to communicate by typing into an iPad.
She told us, “The oil make my mind stop, be so jumbled.”
Harli is now communicating with her family and finally saying what her mom has been waiting for.
“My mind listen much more now and it helps my body listen, it’s like freedom for me,” says Harli Kirkpatrick.
Her mom couldn’t be more excited.
“I’m really glad to see the seizures gone, I’m really glad to see them gone and it astounds me every day what made them go away,” says Mugler.
Harli is now feeding herself again, communicating, and gaining strength and coordination that seemed impossible six months ago.
It’s bringing Tami’s dreams for her daughter back into focus and giving Harli her own.
“To go hiking and see more my country as so much not accessible to me with my chair. I like to run one day with my friends,” says Harli Kirkpatrick.
“When you look back at the journey we’ve had and the medications we’ve tried, and the things we’ve done and the miles we’ve traveled, it’s so astounding that something so simple as hemp gave her, her life back,” says Mugler.
Heartland Hemp Company is lobbying for industrial hemp to be grown here in Iowa. The company is meeting with lawmakers and hope a bill will be introduced this session.
Harli has an appointment to see her neurologist later this week for an update on her progress.
Her mom is hopeful Harli is off all prescription drugs within six months.
To follow Harli’s journey and learn more, click here.