A Day For Avery…….

Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati, who at the time was 5 months old.  Avery, who was born on 11-11-11 had been diagnosed with an incurable genetic disease and her parents were informed that she would not only lose her ability to walk, stand, sit, eat, breathe and even swallow, but that she would pass away within the next 18 months. Avery had Spinal Muscular Atrophy, or SMA for short.

When diagnosed, Avery’s parents Mike and Laura decided not to crumble… as we think anyone faced with the reality that their child had a terminal illness would probably do. Instead, they created Avery’s Bucket List and decided to provide their child with an accelerated life. Mike and Laura documented all of Avery’s firsts from her point of view on their blog (www.AveryCan.Blogspot.Com)  and it was not long before the site went viral with millions of viewers logging on to see what Avery was crossing off of her “Bucket List” next.

On April 27th of Opening weekend at Constellation Field, Avery and her family joined us to cross a few more items off of her list. The blog read as follows…

Items I Can Scratch Off My Bucket List:

1. Go to my first baseball game
2. Throw out the first pitch at a baseball game
3. Throw a strike…whatever that means.
4. Have thousands of people cheer for me at once
5. Shake hands with super hot baseball players.

6. Meet some of my SMAns (SMA+Fans)”

SMA happened to take her life three days after meeting the players, staff, and fans of the Skeeters who were touched deeply by her story. Avery’s parents made her a promise that they would continue to be activists in raising SMA awareness, making genetic testing universally available, and helping to find a cure for her friends and the Sugar Land Skeeters and other very generous sponsors and donors want to help with that.

Although Avery has passed, her blog and awareness continues. One of Avery’s newest Bucket List goals is to help raise the remaining $365,000 (out of $1 million) 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.

On August 13th at 7:05 PM,  the Skeeters will be honoring baby Avery with “A Day for Avery” at the ballpark and will be crossing a few more items off of her Bucket List. We ask everyone wears purple that night to “Purple Out” the stadium. In addition, the players will be wearing special jerseys in her memory for a post-game jersey auction, we will be giving out special STRIKE OUT SMA bracelets to the first 2000 people at the gates, fans will have the opportunity to participate in the world’s longest first pitch where donations can be made for $10 at customer service starting at 6 PM to go down onto the field, a golf cart raffle ,and other special surprises in which all benefit Sophia’s Cure Foundation… the Canahuati’s non-profit of choice for SMA awareness and donations to find a cure.

Tickets will have a special price of $16 for the night- $10 from each purchase will go to Sophia’s Cure Foundation. To purchase online, please go to https://www.ticketreturn.com/prod2/Buy.asp?EventID=76490&promocode=AVERY2012

We hope that you join us in carrying on baby Avery’s legacy and helping us help others to find a cure for these precious children who have been affected with SMA. See you at the ballpark!

Speak Your Mind

*

© 2011 The Sophia's Cure Foundation. All Rights Reserved. The Sophia's Cure Foundation is a non-profit 501(c)(3) public charity. Site by modSpot