SHARE YOUR STORY WITH ME! TELL ME HOW YOU PUT THE ABILITY IN DISABILITY. . .
My name is Heather Urick and I have lived the last 20+ years with a progressive, terminal, neuromuscular disease. Freidrich’s Ataxia is a form of Muscular Dystrophy. It is a disease that is autosonomal recessive, meaning that the chromosomal deficiency, carrying the diseased trait had to be present in both my mother and father, neither of them show any physical signs of the disease. This collection of personal histories, rants, ravings, tangents, metaphors, clichés, and personal philosophies may seem to be rather controversial but I seem to have lived my life in a controversial, and unconventional, way. For me,
‘living on the edge’ is the only way to live.
This collaboration of writings was supposed to be a combined effort with my dad, resulting in a book. He
was going to write based on a parent’s perspective of having a child with a terminal disease and I would mesh it with my perspective. My dad passed away in December of 2005 due to complications from a chemotherapy treatment he had received in his continuing battle against Squamous Cell cancer. What you read now, is a tribute to him and the strength he has given me.
I was diagnosed at age 12, I simply stumbled a lot in those early years. The disease has slowly worsened over the years. I am 40 years old now and have a substantial amount of muscle weakness and loss of motor control.
Over the years, I have pursued an education, volunteering time with the Muscular Dystrophy Association for promotions & fundraisers. I worked and volunteered with Centers for Independent Living in 3 states. I believe in an Independent Living philosophy, empowering people with disabilities to be able to
advocate for themselves.
There are, approximately, 56 million people with disabilities in the United States. That means that 1 out of every 5 people in the U.S. has a disability, whether that be neighbors, friends, or family. Out of that 56 million, 70% are unemployed. Sound fair???
‘living on the edge’ is the only way to live.
This collaboration of writings was supposed to be a combined effort with my dad, resulting in a book. He
was going to write based on a parent’s perspective of having a child with a terminal disease and I would mesh it with my perspective. My dad passed away in December of 2005 due to complications from a chemotherapy treatment he had received in his continuing battle against Squamous Cell cancer. What you read now, is a tribute to him and the strength he has given me.
I was diagnosed at age 12, I simply stumbled a lot in those early years. The disease has slowly worsened over the years. I am 40 years old now and have a substantial amount of muscle weakness and loss of motor control.
Over the years, I have pursued an education, volunteering time with the Muscular Dystrophy Association for promotions & fundraisers. I worked and volunteered with Centers for Independent Living in 3 states. I believe in an Independent Living philosophy, empowering people with disabilities to be able to
advocate for themselves.
There are, approximately, 56 million people with disabilities in the United States. That means that 1 out of every 5 people in the U.S. has a disability, whether that be neighbors, friends, or family. Out of that 56 million, 70% are unemployed. Sound fair???
