Jacob's Journey

Our names are Kristen and Nicole. In 2020, our little brother Jacob received news that no 20-year-old could imagine getting.

Let's start from the beginning. When Jacob was little, we used to tease him about the goofy way he would run. As he got older, we realized he was walking heavily on the balls of his feet. We attributed it to tight Achilles tendons, both of which Jacob got surgery on while in high school.

After starting college at Iowa State, Jacob started to notice his mobility was progressively getting more difficult. He found himself dreading staircases, leaving heavy backpacks at home, or even letting the 'tall' busses pass just so he could more easily climb on one of the 'low-rider' busses.

He started doing research and asking lots of questions. Tests were taken, and a diagnosis was received in June 2020:

Limb Girdle Muscular Dystrophy type 2J/R10 with cardiomyopathy.

A condition causing weakness and wasting of the muscles in the arms, legs, and heart.

No disease-modifying treatments are available. Goals of therapy include maintaining mobility and functional independence, managing associated complications, and maximizing quality of life.

Muscular dystrophy itself is a rare disease, Jacob's specific diagnosis is less than one in a million.

At just 20-years-old, Jacob found out his body was failing him.

All of our hearts broke for him.

It is a cruel diagnosis. It is a rare condition. We do not know what the future holds. What we do know is that he has to take it day-by-day and learn how to handle the new challenges that this condition forces him to face throughout his life. Challenges that the majority of us have the privilege to never think twice about. 

From Jacob: "This news shifted my entire perception on life itself and made me realize how fragile it all is."

One of Jacob's dreams growing up has been to hit the open road and live the 'van life'. We all know the reality of college, bills, and life can often cause people to give up such goals. With this diagnosis, we knew Jacob's Journey had to start now.

Our parents found an old plumbing truck and we decided as a family to build the ultimate camper van for Jacob. It took nearly nine months, but with our dad's technical skills, Jacob's industrial-design training, and our family's hard work, the van was completed in time for Jacob to hit the open road in 2021 almost exactly one year after his diagnosis.

He traveled over 25,000 miles through 37 states over the course of 18 months. It was everything he'd imagined and so much more. He decided to return to Iowa to finish his college degree.

In August of 2023, we received a devastating phone call from our dad. Our beautiful mom, who had poured her heart into all of our dreams, had suddenly and unexpectedly passed away. Our entire family struggled to navigate a world where she had been the light. We still travel the long road of unending grief. Mom was the living example of unconditional love. She was the fixer in all of our lives, and now we have to learn how to carry her spirit and legacy without her here. She bore a heavy emotional burden after learning of Jacob's diagnosis, but Mom more than anyone wanted to see him access and live out any dream he could possibly have.

In December of 2023, Jacob graduated from Iowa State University with his Bachelor’s degree in Industrial Design. He has decided to continue his "van life" journey - he heads back out on the road as he applies for jobs, works on designing an outdoor-capable wheelchair with full suspension, and setting the path to bring it to market someday.

This GoFundMe was started during his inaugural van-trip in 2021.

From Jacob: "I will be forever grateful for all those who donated toward my dream. Many tanks of gas, a few flat tires, and hundreds of camper meals were possible thanks to the combined efforts of so many while I traveled the country. As I head out on the road again, I am prioritizing my dreams over income - not an easy decision. But, as my mobility continues to dwindle, I will soon become wheelchair-bound and travels like these will become inaccessible. I want to experience as much of the world as I can, with the mobility that I have."

Please consider your donation as a "tank of gas" toward our little brother's dream. We don't know what the future will hold, but we do know the importance of enjoying each day as it comes.

Follow along with his adventures on Instagram and Facebook @JacobOnTheRoad. We all truly appreciate your support in whatever form that may be.