While scrolling through the headlines on www.khou.com one afternoon I came across the story of Avery Lynn Canahuati. Avery was a cute little baby girl born just one day after my daughter Violet Grace. Possibly even in the same hospital in downtown Houston. This story really hit home for me especially having a daughter so close in age.
You see at just 4 months Avery was diagnosed with a condition previously unknown to many including her parents. The prognosis left this sweet little angel with only 18 months of projected life remaining. Unlike most of us probably would the Canahuati family chose not to sit around and mourn the loss before their child was gone but instead created Avery's Bucket List (http://averycan.blogspot.com) and assisted their daughter in living a fuller life than those many times her age.
Unfortunately on 04/30/12 the doctors 18 month projection proved to be too optimistic as Avery took her final breaths.
Avery has become an inspiration to a lot of people. Right now her blog is nearing 5,000,000 hits in just a month! Avery has brought SMA into the spotlight but we all need to pull together and keep the momentum alive.
I am not an SMA expert but below are a few facts (Borrowed from The 200 for SMA)
- SMA is the #1 genetic killer of children under the age of 2
- SMA is estimated to occur in nearly 1 out of every 6,000 births.
- 1 in every 40 people, or nearly 10 million Americans, unknowingly carries the gene responsible for SMA.
- SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
- There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
- Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years if provided the necessary funding
A few links of interest related to SMA are below
- http://averycan.blogspot.com
- http://www.facebook.com/AverysBucketList?ref=ts
- http://www.change.org/
petitions/ ob-gyn-offices-medical-professi onals-any-woman-that-is-plans- to-be-pregnant-make-sma-carrie r-screening-standard - http://www.the200forsma.com
- http://www.sophiascure.org
- http://www.fsma.org
- http://www.smasupport.com
Great job, Tom! Even if you spread the word to a few, you are doing something, and I am sure you will continue to grow your efforts with the support of many. Excellent cause to be promoted and we are very proud of you. ~Kristen Moore
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