What made you want to share your experience with CMS?
My mom made me want to share my experiences with others. I grew up in a small town and any news of CMS was nowhere nearby. My mom didn’t really know what was going on or why I was moving the way I did. When she finally discovered Doctor Harvey Singer she was so relieved. I guess I just want there to be more information out there and for more parents to know what their child is going through.
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When I was first diagnosed with CMS when I was 8, I was told I’d outgrow it. When I was 17, and still hadn’t outgrown it, I started looking to see how many other adults hadn’t outgrown it. When I was searching online, most of what I found was worried parents who had young children with CMS and didn’t know what to expect or what it meant. I wanted to tell them not to worry and to give them an idea of what having CMS is like, so I started sharing my experience
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