Hello, my name is Stacey and I am going to be a guest blogger today on the Getty Owl site. Today we have quite a few new visitors thanks to some wonderful bloggers who are out there spreading the word. Since many of you are new, we are going to go ahead and start at the beginning.
This is Getty Storm, my friend Kate and Mark Storm’s beautiful 6 month old daughter. At the end of July, Getty went to her routine 4 month pediatric appointment. Kate and Mark assumed that the most painful part of this trip would be the immunization shots that Getty received at the end of the visit. What they didn’t know was that they would be told 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.
When Kate told me, I was crushed. As a new mom, 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. 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 this site for Getty was started. It’s a place for the Storm family to share their updates about Getty. It’s a place for people to learn about SMA. It’s a place to share upcoming fundraising events being held in Getty’s honor. It is a place to help raise money for and awareness about Getty and her condition.
The first fund-raiser is also on the books and moving and grooving!
GETty Crafty at Fremont Park is set to take place 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, staceyball(at)gmail.com!
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 here. 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.
[…] This post was mentioned on Twitter by kenny, kenny and Stacey Ball, gettyowl. gettyowl said: Meet Getty….http://gettyowl.com/2010/09/20/meet-getty/ […]
Stacey I had the same reaction, can’t wait to meet you. I work with Kate and I’m trying to get as much $ as I can, my goal is every $200 that I can raise is one more day Kate stays home with beautiful Getty! Maybe people will start donating “Days for Kate, Mark and Getty”. Hope to see you at the Craft Fair. Eileen
What a beautiful little girl… I’m so sorry that her world has changed so radically and I will keep her and her family in my thoughts and prayers and help monetarily whenever I can.
[…] you ever heard of SMA1? Neither had I until Stacey, a beloved reader, emailed me about Getty Storm, the infant daughter of close friends of hers, who was recently diagnosed with the disease. If […]