Sweet Getty and her mom, Kate
Whatever your opinion is of Sacramento there is one thing that I think everyone should agree on – Sacramentans care about each other and the world. Sure we have lots of problems, what city doesn't? Yet we try very hard to make sure our homeless population is cared for through numerous charities and church ministries, hours after the disasters in Haiti and Japan local bloggers and residents were already organizing relief fundraisers, and when we hear about little ones in our community suffering, we pitch in to help however we can.
Sacramento blogger Stacey Ball is no different and has started the Getty Foundation in honor of her friend’s sweet baby girl, Getty, who was diagnosed with Spinal Muscular Atrophy (SMA) when she was four months old.
The Getty Foundation website describes SMA as “an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.
There is no cure or treatment for SMA. The lifespan with SMA1 is seldom longer than 2 – 3 years.”
For parents of newly diagnosed children this news is shocking and completely devastating to say the least. When little Getty’s parents got the news Stacey knew she needed to help however she could and the idea for The Getty Foundation began to take shape. Please visit the Getty Owl website for more information on Getty and the Storm family’s journey with SMA.
The Getty Owl Foundation was established in February of 2011 with the goal of raising money to assist families who are newly diagnosed as well as fund research for a cure for SMA. Getty is not personally benefitted from funds raised for The Getty Foundation, though there is a place to donate for Getty specifically on the Foundation website. Both the Sacramento crafting community and blogging community at large has come together for Getty in a very beautiful way.
Getty just celebrated her first birthday on March 25th (yay Getty!) with a special giveaway filled birthday party held virtually on the foundation blog.
Coming soon is the release of the "Lullabies for Getty-Sweetwater Child" album available to download on iTunes. I have heard a few songs from this album and it is truly not one to be missed. Absolutely beautiful! You can get a little listen yourself on the Getty Blog.
If you are interested in joining us in helping The Getty Foundation please consider participating in any of these upcoming events:
June 11th: 2nd Annual GETty Crafty at Fremont Park from 10am to 3pm.
August 13th: SMA Awareness Night and SMA Art Auction: meeting at the capital and walking through the streets of 2nd Saturday to support awareness. There will also be an art exhibit by children and parents with SMA, live music and crafts at various locations in Midtown.
September 19th: 2nd Annual Getty Owl Golf Tournament at Granite Bay Golf Club
December 4th: Team Getty runners will be participating in the California International Marathon. There are 80 runners currently with more signing up every day.
February 26, 2012: First Annual Getty Owl Run: Quarter Mile Kids Race/5K/10K with post race family festival.
If you would like more information on any of these events please email Stacey at hoot@gettyowl.org.
On behalf of our family, I want to thank you for posting about our sweet Getty and the Getty Owl Foundation. We are determined to help eradicate SMA. No family should have their child get this diagnosis. We are passionate about getting SMA awareness out in the Sacramento community and beyond. 1 in 40 are carriers of this devastating disease and it just takes a simple blood test to find out. Thank you for becoming an SMA warrior, you are in good company. They are growing by the day! We are so humbled.
ReplyDeleteThanks, I am so happy to be involved with this!
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