Living With Wolfram Syndrome – Adam Zwan

New Beginnings

a group of children in the sunset with a sign that says HOPE above them.Wolfram Syndrome is a rapid aging and deterioration of the central nervous system. The damages consist of diabetes, chronic kidney failure, deafness, and blindness; it’s not anything to be ashamed of, it’s just not something worth bragging about on the first date.

Throughout life I have experienced my fair share of health issues, some resulting in hospitalization, some ending with a seizure, and others finalized with constipation. I now look at all my past complications and can comfortably say it is water under the bridge because there is hope in the future for improved living. Things started improving when I first decided to move out on my own. Next is the golf cart I will acquire through vocational rehabilitation that will provide independent transportation to and from work. The next thing I hope will happen is a clinical trial for Wolfram syndrome. I understand that there are multiple hurdles before the trial starts. If trials are successful (first in the U.S. since 1938) then my mind will be put at ease from thinking that health struggles will continue getting worse. Thus, I will be forever grateful to The Snow Foundation and Dr. Urano for making such a life-altering path.Road sign that says the future is now.

All in all, I have proven to myself as well as people I come in contact with that patience is a virtue and perseverance can pay back in full. I will maintain hope and keep on being patient until the trial starts. It is amazing to imagine what the future may hold and that I may now start setting long term goals to be accomplished decades from now.