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Tuesday, May 1, 2012

Avery's Bucket List & SMA Awareness

Although this is a review blog and I typically only post product reviews I feel strongly compelled to share a story that I recently came accross that has really touched my heart.  I want to help a little girl's family spread awareness of an incurable genetic disease called SMA.  SMA stands for spinal muscular atrophy and it affects a surprisingly large number of people.  The family of little Avery Canahuati found out earlier this month that she had this disease and she passed away due to complications of it yesterday afternoon.  Her parents' created a blog, Avery's Bucket List, to promote awareness of the disease and to try to raise money for research on how to prevent/cure SMA. 

From Avery's Bucket List:
"What is SMA:  SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN's do not offer tests for it, and it's not included when performing genetic pre-screening tests for other potential diseases & disorders. There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs - especially of the respiratory system - and eventually leads to death. 1 in 40 people are carriers of the SMA gene. Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it."

In sharing the link to the blog Avery's parents started and providing people with a little awareness regarding SMA I am just trying to do my part in ensuring that this little girl's and her parents' voices are heard and that her short life makes a difference in as many others' lives as possible.


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