Mermel's Blog Cabin

Charter of Health Freedom

mermel112: I'm a 40 year christian woman with Spinal Muscular Atrophy Type II since birth. It is caused by a recessive gene in both parents. 1 in 60 N Americans carry the gene. 1 in 6000 births, not rare. Living until diagnoses was made was the rare part. But diagnoses in 1969 was hard. Symtoms at 6mo I was 2 years old by diagnoses. Then called Werdnig-Hoffman's it was then rare to live to 5 yr.s I was treated as any child to be as independent as I could with tools and supports. I was not given special treatment with discipline. My parents did their best for those times. Dr. Phil, Super-nannies and Oprah were only in school & Collage. Perhaps choices and help were not available then. I've tried to lead as normal life as possible. However had to learn to be an advocate when I had to leave my apartment with attendant and live in a care facilitu in Jan, 2000. Deaths due to lack of staff inspired me to speak-up. My parent split up when I was 2 an both remarried. So I was gifted with 2 families. I love God and try to talk with him daily. I'm fair from perfect but do my best to work on my shortcomings. Mom went to be with God in 1988 due to Pancreatic Cancer Aged 43