Raquel shortly after her diagnosis and me on the steps of the Wash U School of Medicine.

It was a little over 2 years ago when I embarked on this journey with Wolfram syndrome. Last October, I received a devastating blow, one that would change my life and others forever.  My youngest daughter, Raquel, was diagnosed with Wolfram Syndrome, a terminal form of diabetes.  She had been diagnosed with Type 1 diabetes just 9 months earlier.  As a mother, I decided that I was not going to stand by and watch the deterioration of my little girl. There was a lot of work to be done and I was going to do it.

For the last 11 years I have coasted along as a wife, mom and friend. I am blessed that I do not have to work, but I always felt something was lacking in my life, so much so that I frequently brought it up to my husband, Barclay.  When the Wolframs diagnosis occurred, I knew it was God telling me, “Here is your chance, go out and make a difference.”  I am blessed because I had a dad who had an unbelievable personality and who was a well-known athlete, having played for the LA Rams and later as the announcer for the St. Louis Rams. In addition to my dad, I have a brother with a heart of gold who is also well-known for his athletic accomplishments, but in baseball having played in the Major Leagues for over 13 years.  Thus, The Jack and JT Snow Fund was born.

This blog will be painfully therapeutic for me, but also helpful to others dealing with Wolfram syndrome and those who are wondering just what this disease is all about.  I’m not Patricia Cornwell or J.K. Rowling, so bear with me as I take you on the journey that I began back in October 2010.