Tuesday, May 1, 2012
Avery's Bucket List
For those who haven't read Avery's Bucket List it's a beautiful blog "written by" little Avery, who was diagnosed with SMA (Spinal Muscular Atrophy) a deadly genetic diseases that happens to be the number one genetic killer of infants & children under the age of 2. At around 4 month old (March 2012) Avery was diagnosed Type 1 SMA. She and her parents were told then that she would likely not make it to 18 months of age. She passed away yesterday afternoon surrounded by the love of her mommy and daddy. SMA attacks the muscles which causes inefficiency of the major bodily organs, especially the respiratory system, eventually leading to death. 1 in 40 people are carriers of the SMA gene and currently there is no cure for. Not only is there no cure for SMA but when genetic testing is performed on the parents SMA test is not included. The first Avery's parents had ever heard of SMA was when her neurologist suspected she may have it and tested her then. Avery's bucket list was created to let Avery live as much of life as she could in the short time she was given, but her major goal was to always be raising awareness about SMA. I would say that she accomplished that goal. She had people sharing her story with their friends and even had a YAHOO! article posted about her blog. So, the point of this post is to help her keep her goal going and share her story with all of you in hopes that it will raise further awareness about SMA. A way we can ALL help her AND her friends (that have also been diagnosed with SMA) is to help her finish one of her newer goals which is to raise remaining $365,000 (out of $1mil) needed to bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends OR at the very least offer advancements towards a cure for them.
Please visit Avery's Bucket List to read more of her story and more about SMA.
Rest In Peace Avery Lynn Canahuati 11/11/11 - 04/30/12Click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization, so all donations are tax deductible. You can even make your donation in Avery's name if you want.
Please share her and her friends story to raise even more awareness about SMA.