Turning Two
When Marian turned one I did not know if she would live to be two. That sounds like an exaggeration, it’s not. I only shared this thought with my very best friends because it was so horrible. At the time we knew Marian probably had a storage disorder, but had no idea which one. Only that lysosomal storage disorders are 100% fatal and 95% not treatable. She was barely starting to crawl, barely putting weight on her legs, choking on her food and was underweight and not growing