Friday, May 11, 2012

Princess Avery Canahuati

I found a new little princess last month. Sadly, she passed away one week after I discovered her. Her name is Avery Canahuati and today is the 6-month anniversary of her birth (she passed on April 20, 2012). Avery had Spinal Muscular Atrophy (SMA) which causes one to lose all muscular function. In infants, it has also been known as Werdnig-Hoffman disease. Avery's dad, Mike, created a blog about Avery after she was diagnosed with SMA in the beginning of April (on Good Friday, April 6th) this year. It is a beautiful and well written account of life even in the midst of great stress. Avery and her parents encourage everyone to donate to Dr. Kasper's Gene Therapy through Sophia's Cure to help other's with SMA. You can go to this URL to get there: http://www.the200forsma.com/?p=557 . I have only known one other child in my life with SMA and it is a cruel disease. As it says at Avery's blog, if we all work to bring this terrible disease to an end, someday SMA will stand for "Shoulda Missed Avery." I have attached a link to Avery's Bucket List on the left side of this page if you would like to read about this little princess and her life.

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