Our names are Kristen and Nicole. Last year, 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 R10.
A condition causing weakness and wasting of the muscles in the arms and legs. Weakening of the heart muscle occurs in some forms of limb-girdle muscular dystrophy.
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.
There are still days full of tears and anger - from all of us.
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 has 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 almost exactly one year after his diagnosis.
Jacob has decided to take time away from college to travel across the United States. This means time away from any sort of job or source of income, too. While he has worked hard through the years to build savings, we don't want to see Jacob's Journey cut short.
Please consider this a donation to our little brother's dreams. 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.