Rare Disease Day


Today, Feb. 28, is Rare Disease Day. Around the world, “Day by day, hand in hand” people face these rare diseases and hope for cures. There are about 7000 known rare diseases in the world. In the US a disease is considered rare if it affects less than 200,000 people. Both Katelin and I have one. For me, I am one of only about 200-300 in the US. But, there’s a fairly effective treatment for mine. I may be a rarer case, but I’m a luckier one. I have a friend whose child is one of less than 50 in the WORLD. Can you imagine being so alone??

Today, along with all the Rett children that have lost their lives, I am remembering little Brooke today, who passed away from Tay Sachs, my friend, Hazel, who lost her short fight with ALS, and dear Scott, who succumbed to Legionnaire’s and a little miracle man named Timothy who continues to beat insurmountable odds against Trisomy 16.

I am not naive enough to believe that all of these 7000 diseases will have a cure, but I am idealistic enough to believe some of them will. And, I’m hopeful enough to believe that just maybe, just maybe Rett syndrome is going to be one of them.


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