Jordan's Story

By Elizabeth A., Washington

I am a recent graduate from Washington State University and it was there that I met my current boyfriend, Jordan. I don’t know that words can truly do him justice, but I’m going to give it a try.

Jordan and I met freshman year while we were living in the same dorm. I was immediately drawn to his warm smile and quiet confidence. He was kind to everyone around him and people loved to be in his company. We dated for a while but ultimately decided neither of us was ready for anything very serious. In the next few years, Jordan’s father had a long stretch of medical procedures due to VHL. He had to receive brain surgery multiple times and had ongoing kidney complications. Jordan moved across the state home to Olympia, Washington, in part to take care and be available for his father.

 It was the summer before my senior year that we reconnected with emails and phone calls. Jordan was the same amazing person as before, and this time I was ready for him. It has been in these past nine months that I have gotten the full story of VHL in his family and how it affects them.

Jordan is the second of three children with a father affected by VHL. Jordan has had tumors in his eyes removed and undergoes regular screenings. I have had the pleasure of meeting his family and can see the difficulty his father is having. It breaks my heart to see his family in pain both by the day-to-day struggles and the uncertainty of the future. Although I can’t imagine such a hardship, they take it in stride. They are warm and funny and are constantly looking on the bright side. Jordan focuses his energies on his family and on me and to say I was inspired by their strength would be an understatement.

As a science major, I could not help my curiosity and dove head-first into journal articles about the disease. I still speak with professors who help me work through the jargon of the medical research community, and I am hoping to expand my under­standing of the cellular mechanisms for the disease. I wanted some way to show Jordan my support and to help in a tangible way. Jordan was familiar with VHL Family Alliance, and when I proposed to run the Seattle Half Marathon to donate to charity, it was the VHL Family Alliance that came up first. I sent out emails to my family and friends and set up a website: http://www.firstgiving.com/elizabethaultman.

 On November 28th, I ran the half marathon wearing a shirt I had made simply with the name of your organization on it. I hope in the future to be able to do and understand more. I love him so much; he and his family have changed my life, and I want to do everything in my power to help.

As printed in the VHL Family Forum 19:2, April/May 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.