Do you ever wonder about families across the globe who are also affected by MPS or other rare diseases? Do you wonder if they face the same challenges and experience the same joy as you? I know I do.
About a month ago, I signed up for Google Analytics at the suggestion of a friend. It is an amazing tool to analyze visits to a website, but my true purpose was to see whether this site was actually reaching anyone, was it actually helping or comforting or providing information to any families.
My goal at the very beginning of this blog was to both chronicle our journey (especially Case’s through the clinical trial), provide information about things like IEPs, therapy items, etc. so we’re not all reinventing the proverbial wheel for our children, and also to provide information, videos, and understanding for newly diagnosed families that are trying to process this MPS life. I hope that this site is doing that and feel free to comment if there are things you are really hoping to see on here or discuss!
I’m excited to say that I think we’ve connected with MPS families worldwide. In the last month, people from 19 different countries have viewed one or more pages of this site including places like Egypt, Thailand, and Azerbaijan. The site has been viewed in 12 different translations. And within the U.S., 43 states were represented.
I am sad that MPS affects people everywhere, but it is also comforting to know that no matter what country or state we live in, we can all connect and understand each other through our children that we love.
Thank you for bringing Case’s journey into your life.