Biography

Hi there! I am 56 years old & was diagnosed at age 5 in 1968. I have gone to college away from home, had a 17 year career with Social Security, & have been married for 20 years. We currently live in FL with our dog Rex. I retired in 2007 because I had a Stage IV pressure sore that required surgery & rehab time. Although I loved my job & felt extremely proud of my contribution to society, I knew I could not maintain the hours and still keep from getting pressure sores. I currently enjoy retirement very much. I’m not taking Spinraza injections because my insurance would not pay for the genetic testing. I’m not sure if I could have them anyway since I have an incredible amount of bones in my back due to spinal fusion at age 10. I am hoping a different type of treatment will come about in my lifetime. I love talking to people and educating able-bodied about disabilities!