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.
We frantically ran around the house this morning getting ready for Morgan’s arrival. We were getting our pictures taken today and we couldn’t wait to update our family album with more pictures of our little Getty. I picked out a couple of outfits for Getty. A white and blue gingham dress, check! One owl hat, check! And one pink tutu, check!
I washed Getty’s face and brushed her ever thickening brown hair. She was ready to go. Morgan arrived and we were off making memories. We were able to take some family pictures outside. The rain had started trickling down this morning, so we were limited with outside pictures. With a couple of wardrobe changes, Getty was able to have several pictures with her ever growing owl collection. She was also able to have a few with Crunchy Lion.
Morgan’s photography abilities are incredible. She has such a great way of capturing Getty’s personality. Her blue eyes seem to transcend through the lens. Morgan we thank you for your time and the love we know you share of our little owl. We hope to get out to another one of your volleyball games. Congrats on your first win. That must feel incredible.
Last night we were able to connect with the McWilliams family. They graciously invited us over for dinner. We got to meet their beautiful children. They know the journey we are currently on. They too had children with SMA. The moment we met them I got this overwhelming feeling of comfort, kind of like being home. For me it has been very difficult to relate to people. Regular conversations take on a whole new meaning for me and I have kind of detracted from regular reality. It feels like being in a bubble. We were able to discuss that and it felt so nice to hear that I truly was not crazy, we are just certainly going through something that most people have no concept of, which in turn is hard for people to help and it is also hard for me to communicate.
Mark, Getty and I all enjoyed ourselves. Thank you so much for your hospitality and support.
While we were there last night, Getty sat in a bouncer. The bouncer had a mirror connected to it and it was clear that Getty was enjoying looking at herself. She smiled at the sweet reflection. That got me thinking. So this morning after Morgan left, I hightailed it to Target to make a purchase. I came back with a toy mirror that can stand while Getty lays down. I set it up and she just squealed in delight. I wonder if she knows she is looking at herself or if she just thinks a friend came over to see her. Either way, she spoke to the image for hours today. It was so cute to listen to.
I love weekends because Getty and I can take long naps together. This afternoon we were able to take advantage of a lazy Sunday and grab some zzzzz’s and some snuggles. Thanks for the cuddles Miss Getty.