Jaci’s Story: The fight against an aggressive and rare form of ALS

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SPENCER, Iowa (KTIV) –  “We’ve been down this road, we know what this disease is and it is the closest thing to hell on earth that any person can endure. And I thought, my parents have buried one child. They don’t need to bury another,” said Jaci Hermstad.

Late last year, Jaci Hermstad, of Spencer, Iowa, was diagnosed with a rare and aggressive form of ALS or Lou Gehrig’s Disease.

The situation is no stranger to the Hermstad family.

KTIV was there 14 years ago when at the age of 11, Jaci’s twin sister Alex was the first of the sisters to be diagnosed with ALS.

The disease attacked Alex with a vengeance, taking her life eight years ago. The healing process has taken a while for the family, but Jaci’s strength has helped the family move forward.

This time though, there is hope through a medicine being tested specifically for Jaci, but it requires FDA approval.

25-year-old Jaci still has the same bubbly personality and infectious smile as she did when KTIV caught up with her in July. She had recently graduated from college and was looking forward to the future.

But in the last few months, Jaci has been dealt a life-changing jolt. Late last year, doctors confirmed her worst nightmare.

“The last thing I ever expected was being told, you have ALS, that this is the cards you’ve been handed. Here you go. Go home,” said Jaci Hermstad.

Doctors told Jaci she had an extremely aggressive and rare form of ALS called FUS, P525L Mutation.

“Time is not on your side and it’s very scary,” Jaci said.

“What did you start noticing that you kind of went, uh oh, I don’t like this. This just doesn’t feel right,” asked KTIV’s Stella Daskalakis.

“The first symptom that I remember vividly. Actually it was the day after Thanksgiving, I tried to get on my horse and I was like, my legs are so heavy. I could barely get my left foot into the stirrup,” said Jaci.

When she feels up to it, Jaci takes a short trip to visit her horse named Bud.

“He’s ornery and stubborn, and he’s 16’2″, big, and definitely a good boy,” said Jaci.

Jaci hasn’t ridden Bud for several months, and she has a feeling he senses something is wrong.
When she’s around, he stays close to her and even teases her.

Bud is a beacon of light in Jaci’s day because her battle against a hostile enemy, in this case, ALS, will be hard-fought.

“When you are given the diagnosis, you are not given a single day. And the fact that there’s hope, I mean, that’s all you grab onto and you run with it, as hard and fast as you can,” said Jaci.

Jaci says she is throwing the kitchen sink of nutritional supplements at her body and doing exercises to stay active. But this form of ALS is aggressive and greatly affects Jaci’s ability to move, and things have gotten worse since our visit with her.

On Thursday, April 11, on News 4 at 10, we speak with Jaci’s parents, who are doing everything they can to help their daughter.

A personalized medicine will be made specifically for Jaci’s ALS. The drug is called ASO (antisense oligonucleotide) and has to be made, manufactured and tested for safety for the FDA to approve.

It will be applied under what is called Compassionate Use, basically for investigational use. It’s a race against time for the family.

The community is rallying around Jaci.  A fundraising campaign is underway to raise money for the experimental therapy for Jaci, which is expensive. In addition, a fundraiser will be held this Saturday, April 13, in Spencer, Iowa.

Stella Daskalakis

Stella Daskalakis

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