(Repost from Stacey's Blog) Please Read!:
Many of you have heard me mention the name Getty, the term SMA1 and my friend Kate. I keep dropping hints that things are in the works but haven't said much about the cause as a whole until now. So sit down, hang on and PLEASE read and show your support. I don't ask much from you my wonderful readers...but this time I need your full attention.
This is Getty Storm, my friend Kate and Mark Storm's beautiful almost 6 month old daughter. At the beginning of August Getty went to her routine 4 month appointment. Kate and Mark assumed that the most painful part of this trip would be the shots that Getty received at the end of the visit. What they didn't know was that they would be told that their daughter likely only had two years to live.
Getty was diagnosed with SMA1. Spinal muscular atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness, eventually leading to death. Infants like Getty with SMA Type 1 are born with very little muscle tone, weak muscles, and develop feeding and breathing problems over time. Weakness gets worse and will eventually become severe. There is no cure or treatment for the progressive weakness, making this condition terminal.
When Kate told me, I was crushed. A new mom myself I had no idea how to handle the news. Getty was Leyton's first girlfriend...his cougar. I went home and cried all weekend. I made a tape of lullabies and cried each time I listened to it. I held Leyton tighter than I ever had and kept telling him I loved him with tears running down my face. Then I woke up and realized that I had to help Kate and her family. I decided to make it my mission to do anything and everything I possibly could to make things easier. I knew that the two things going for me was that I knew a lot of people and I knew how to throw events. Since Getty's condition is considered terminal her insurance will not cover many of the medical expenses and equipment that Getty is going to need.
With the help of my friend Jenn, Becki and Meghan a site for Getty was started. It would be a place for the Storm family to share their updates about Getty. It would be a place for people to learn about SMA. It would be a place to share upcoming fundraising events being held in Getty's honor. It ultimately would be a place to raise money and awareness about Getty and her condition.
www.gettyowl.com is now officially up and running. Go there, read and tell your friends all about it!!!
The first fund raiser is also on the books and moving and grooving!
GETty Crafty at Fremont Park is set to take place here in Sacramento on October 16th. We have over 50 vendors coming out, live music and some great sponsors. We also have an AMAZING raffle that we will be selling tickets for. There will be more information on the vendors and the raffle coming soon so please stay tuned!
Now that you have read all of this you might be wondering how you can help. The first and easiest is if you have a site, if you tweet, if you simply Facebook...spread the word about Getty's site and about the craft fair. We have created an event on Facebook which you can see here:
If you are local, come out to the event. If you are a vendor, sign up to be part of the event by emailing me!
There is also a cute little button that you can put on your blog letting everyone know that you support Getty Owl.
Finally, if you would like to make a monetary donation you can also do that through Getty's site. This money goes directly to the family to pay for medical treatment and supplies that Getty will need. In the event of Getty's passing, any funds that remain will be donated to further research and help other families out that are going through this same thing.
Thank you so much to everyone that has already shown their support. I'm so happy to be a part of all of this and could not have done it without you.