Jaci’s Story: Two parents’ journey to help their daughter beat ALS

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SPENCER, Iowa (KTIV) —  We have been sharing information about the battle in store for Spencer, Iowa’s Jaci Hermstad and her family. Jaci recently was diagnosed with a rare and aggressive form of ALS, or Lou Gehrig’s Disease. Eight years ago, the disease took the life of her twin sister, Alex. It’s a deja vu of the worst kind for Jaci’s parents, Jeff and Lori Hermstad.

But the family is learning to be thankful for Jaci’s good days, which happened on the day KTIV News 4 visited with her. Jaci lately doesn’t feel great on most days. Jaci’s spirits recently were lifted after a visit with her coworkers at Spencer Ag Center. The company is holding a fundraiser for her on Saturday, April 13, in Spencer, Iowa.

“It really is the little things in life that make the best of what’s so crummy in life,” said Jaci Hermstad.

Jeff, Lori, and Jaci don’t have time to waste on the negative aspects of ALS. They are trying to remain positive and hopeful. An experimental therapy, designed just for Jaci, could save her life, but will cost hundreds of thousands of dollars and the FDA must approve it.

The fight for the Hermstad family begins once again. In the middle of the sadness and anger and fear, Jeff, Lori, and Jaci, with the help of a much larger community, say they are going to “Cowgirl Up For Jaci.”

“It’s just so hard to grasp that something so terrible not only took one child, but possibly could take your other child,” said Lori Hermstad.

Lori Hermstad says she noticed a change in Jaci, in between Thanksgiving and Christmas.

“When she couldn’t walk up the stairs, I knew,” said Lori Hermstad, Jaci’s mother.

Now, even more upsetting, Jaci’s ability to move is affected more and more, as time passes by.

“I guess through all the years, it was always in the back of my mind, could this, could this happen,” said Lori Hermstad.

On Jaci’s good days, her dad takes her to visit her horse, Bud. He hopes a cure for ALS is around the corner for his daughter and others who suffer through the debilitating effects of the disease.

“At first you don’t want to believe it, you want to believe it’s a mistake,” said Jeff Hermstad, Jaci’s father.

But somewhere within the intense emotions, a glimmer of hope exists. An experimental drug, which may slow down the progression of the disease, currently is being tested but requires FDA approval.

“It is very very very important that we get this medicine quickly,” said Lori Hermstad.

“We need to work and do everything possible to correct it, change it, fix it,” said Jeff Hermstad.

Jaci’s parents say the fight to beat ALS is fortified by faith.

“She is our whole world. And as a Mother, I will do everything I can and I will leave no stone unturned to fight for her and do everything we can to try to save her.” said Lori Hermstad.

“Thank you for not looking at me any differently. Thank you for loving me. And thank you for fighting for me and Alex. No matter what, said Jaci Hermstad.

The Hermstad family also is reaching out to Iowa lawmakers and other leaders to express urgency about the need to raise the necessary funds for the expensive experimental drug therapy for Jaci, which also needs FDA approval.

To help, Jaci’s coworkers will be hosting a fundraiser for Jaci this Saturday, April 13, from 11:00 a.m. to 1:00 p.m., at the Spencer Ag Center, in Spencer Iowa. We are told at least two Iowa lawmakers will be there.

For more information on that event and the Cowgirl Up For Jaci fundraising campaign, and to view the two stories we’ve presented this week, check the links inside this story on ktiv-dot-com.

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

Stella Daskalakis

Stella Daskalakis

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