“Life is so short. We are not guaranteed an expiration date. We are not guaranteed tomorrow. We are not guaranteed a minute from now. Life is not fair. We need to live it to the fullest every single second.” –Jaci Jean Hermstad
May 1, 2020 was a heartbreaking day for the Hermstad family and all Jaci’s warriors. Jaci lost her battle to ALS. For those of you who aren’t familiar with this brutal disease, it attacks the nervous system. It slowly destroys the brain and the spinal cord and eventually you lose the ability to move all your muscles. There is no putting it lightly, this disease kills. There is no cure. Jaci was a pioneer for developing treatment. Jaci’s twin sister Alex succumbed to this deadly disease on February 14, 2011. Jaci was diagnosed years later that exact same date, February 14.
Doctors were able to develop a new drug, an antisense oligonucleotide or also called, ASO specific to Jaci’s rare and aggressive ALS gene, called FUS. Her twin sister, Alex, helped pave the way for Jaci. Jaci and her family fervently and tirelessly fought to get FDA approval for this first-time treatment no one had ever received before. After 4 emotional months, they traveled to New York City for 8 weeks to receive these infusions. In honor of Jaci and her bravery and courage, they called it Jacifusen. This helped open a door for others to receive the same treatment with hopes of leading to a cure. Jaci, and her parents, Jeff and Lori, and all Jaci’s warriors felt the new hope that this treatment brought. Click the link to see a video about Jacifusen.
The exciting news is that Jacifusen is still being used and developed today. The drug company plans to begin a clinical trial soon in the US and internationally as they intend to continue experimenting and perfecting the drug until a cure is found for ALS. Jaci and Alex Hermstad were dealt an unimaginable hand but because of these heroes, their legacy will live on in fighting this disease and eventually winning!
August 8, 2020 was an honorary day to celebrate the life of Jaci Hermstad. Jaci’s plan was to have a bonfire celebration once she got better. Her parents made sure to execute her vision. Hitch Studio was honored to be a part of the big day. Jaci is a cowgirl through and through; therefore, the perfect venue for the event was Swiss Acres in Terril, Iowa. The venue features two barns where we held a memorial service in one and a dinner in the other.
We decorated the barn with wildflowers, sunflowers, wood slabs, mason jars, and of course photos and memorabilia of Jaci and her sister Alex. Jaci’s mom, Lori, had seen the idea to have wildflower seeds as memorial favors. We created custom labels that said, “You are my sunshine” and a poem for Jaci on the back.
Jaci, you have brought faith to so many people. You have touched so many lives. Every single person who knows you talks about you with the biggest smile on their face. It was an honor to be a small part of your celebration. You have touched the hearts of everyone who knows your family, and you will continue to touch the hearts of so many others with your courage and your story. You have achieved unimaginable things. From one small town Iowa girl to another, “When life gets hard, Cowgirl Up!”