It is difficult not to imagine what the future may hold when medical breakthroughs are on the horizon. Conversations took place during the last Wolfram clinic regarding clinical trials next summer. Clinical trials are fascinating movements forward in the lives of Wolfram Syndrome patients.

After hearing the news that research is going well and treatments are a possibility, I cannot stop thinking about how my life with Wolfram Syndrome may turn a corner in the years to come. Chasing glucose levels, vision loss, hearing loss, kidney failure, and many other complications due to Wolfram Syndrome will all be dealt with in simpler terms if clinical trials are a success. I think a unique treatment for Wolfram and or even diabetes would be as big as Bill Gates and Microsoft.

Even though having high hopes and dreaming of what could be can set a person up to be further disappointed; hope is one of the driving forces behind life’s remarkable occurrences. I dream everyday about getting a full nights rest and not having to wake up every two hours to check my glucose, as well as not experiencing mood swings due to glucose fluctuations all day. Also, I hope to be able to see and hear well enough to drive myself where I need to go and be able to not hassle with visual and hearing difficulties at work. Then there is the hope of being able to eat a well balanced dies and not eliminate certain food groups so that I can stay out of the emergency room. It is so close I can feel it because if Dr. Urano’s medical breakthrough is a success all my prayers will be answered.

Everyone keeps telling me to be proud of myself for dealing with everything I am going through associated with Wolfram Syndrome and not be so hard on myself for any unexpected issue; it seems to always be easier said than done. I know that I have had my fair share of health issues and I am still willing and able to keep moving but incidents, like the one a couple days ago, make it difficult to wake up each morning and accept everything.

It all started with an abnormal schedule due to my on-call employment status. It was a pool class from 9 to 10 a.m., in a room that is kept at 86 degrees, which caused my glucose to fluctuate. After returning home I quickly put my ground turkey in the oven to bake for an hour. Within that hour my glucose dropped and the event began.

For about two hours I felt like I was in a living nightmare. Everything appeared out of order and misplaced. I kept trying to gain my bearings by saying my name and repeating my home address is and that is where I am. Repeatedly, I kept saying “what is going on; am I going insane? Get a hold of yourself!” During all this chaos my father called the house to find out that I sounded strange. The next thing I remember is waking up on the sofa with two EMS officers asking me questions and feeding me a turkey sandwich and orange juice. When I slowly returned coherent the officers informed me that they were called to check on me and when they arrived I was found on the sofa saying wild and unusual things.

To this day I continue replaying the incident step by step in my head trying to come to terms with it all and say ‘This is my life so do the best you can with what you have.” Thinking about events like these make me hurt all over and make me want to find a corner and ball my eyes out. Instead, I keep all negative thoughts and feelings bundled up inside and take it out on myself every morning at the gym. When speaking about my methods to family members they tell me that I should not be so hard on myself and to be proud of all my accomplishments dealing with diabetes and Wolfram Syndrome. In simplest terms, I cannot stop fighting for more and pushing forward with life