Getty Owl Foundation

Giveaway Lowdown!

From Kate & Stacey:

So here is the lowdown on the giveaway happening on Getty’s Birthday, Sunday, March 25th and also an addition day on Monday.

Every hour on Sunday, Stacey will be posting a new item that is up for giveaway. If you are interested on being in the running for any or all of the items, all you have to do is leave a comment on that particular blog post. Winners will be announced on Tuesday, March 27th at 12noon, PT.We will use random.org to choose the winners.

Now for the Grand Prize!!!!

Getty loves books and she thinks being read a book is the bee’s knees. 🙂 So to be in the running for the grand prize you must make a video of yourself reading your favorite kids book. We don’t even require you to be in the video but you can if you would like.

Post to youtube, facebook or email us the video at hoot@gettyowl.org.  Must leave a comment with a link to the video or saying you emailed it. Again, winner of the Grand Prize will be chosen using random.org.

Oh haven’t we told you what the GRAND PRIZE is yet?

Here it is………..

A Kindle Fire! Wowee Zowee!

So it is a win, win. Getty gets to enjoy videos of people reading books to her and the winner gets to enjoy their own tablet to enjoy reading books on.

So join us on Sunday and have a great time commenting and getting in the celebration. The first item will be up for view and for comment at 8am PT. And remember ,you also have all day Sunday and until 11pm on Monday to comment and enter your video. All winners will be announce at noon PT on Tuesday, March 27th.

Cheers!

Our Babe is Turning 2! Let’s Celebrate With Giveaways!

From Kate:

That is right folks, Getty is turning the BIG 2 on Sunday and to tell you that we are excited beyond belief just doesn’t cut it. We are just so proud to be her parents and to know that we have been able to have 2 full years of memories and milestones has been more than a blessing. she has turned into a little lady before our eyes.

In these past two years, Mark and I have really learned about the human spirit and how much strength a human being has once asked to find it and use it. Getty makes life certainly worth living and a kind of living that is unmeasurable. She wakes up with a smile and falls asleep with a smile. Even on our scariest days, she finds some way to reassure us that it will all be okay and that we need to get over all the feelings of fear, loathing, and sadness.

I think it would be hard for most people to understand this but as our lives have changed so much we forget that Getty has a terminal condition. You can’t get through a day without knowing SMA is there but to allow it to control us would have sure consequences. Getty is here and she is happy and healthy, considering everything and we are just living life. What an incredible lesson she has taught us and continues to teach.

In the past year Getty has seen jelly fish and the pacific ocean, visited her animal friends at the zoo, saw a baseball game at the Sacramento Rivercats, has been hospitalized, changed her diet, got her custom braces, visited a pumpkin patch, was an owl again for Halloween :), took tons of walks, was introduced to her stander that she is doing awesome with, observed Christmas lights, went ice skating, visited friends and family at the Getty Owl Run/Walk, and moved houses.

She has been busy and our hope is for us (Mark and I) to be really brave this summer and go to all kinds of places to allow her to experience even more of what life has to offer.We couldn’t be more excited.

Last year the “Lady with all the great ideas” Stacey had a terrific event on our blog on the day of Getty’s birthday. It was an all day event where every hour there was a new item up for giveaway. At the end of the day the winners were announced.

It touched me so much because I know that this was her way to celebrate Getty’s big day. Lots of great people donated items. Jewelry, handmade crafts, gift cards, artwork, and we had a Grand Prize  item of a $100 iTunes gift card and a Flip camera. This year is going above and beyond from last year. More details to come in the next few days.

So if you interested and would like to help us virtually celebrate Getty’s Birthday, check out all of the giveaways every hour on Sunday. Leave a comment to be in the running to win. We will announce the Grand Prize on Friday, so stay tuned, it is really cool. 🙂

Stacey will be posting updates this week on the giveaway celebration. We hope you can join us. And I thank all the people in advance for offering to donate items. You make all of this possible. Thank you.

Stay Tuned.

Oh My Gosh, So Much To Talk About!

From Kate:

Where do I even begin? There have been a lot of good changes over here at the Storm residence, and I don’t know where to begin to make things sound in sync.

Writing a blog, while fun and exciting, as we journey through this journey, can be difficult sometimes. I often want to do a post immediately and later look back thankfully that I got everything out when I did, while other times, I’m so thankful I waited and took the time to digest what happened first. I wonder if some of you do the same.

This post will be long with lots of detail, but the time it took to write it had nothing to do with my need to digest. We literally had no internet connection for about a week. 🙂 As life continued, more and more things started happening that I wanted to blog about occurred. I grew even more impatient to the point I told Mark to call our new internet provider and urged them to push up our connection date in case of medical emergency, which they did. 🙂

Follow Up to The Run

So where to start to catch up on past events? I want to start with the end of the race on February 26th. So many incredible things happened that day and for us. One of the best parts was having SMA families come in support. One SMA mama even ran in the race. Jen thank you and your dad for participating. I hope you had a great time running. Here we are:

The Crew left to right: Scanlon, Storm, Calafiore, and Phelps families

“Nice to meet you!”

Mama Love

It was a beautiful day and having the Scanlon, Phelps, and Calafiore families there in support just made an already great day that much better. Thank you guys for coming! I know driving is no easy feat and can become quite complicated. Having you all there was very comforting. You all fight hard for your kiddos, and it is always an inspiration to know that with love, know how, and vigilance, our kids can thrive and love life. Kaige, Aaron, and Hayden, we hope you had a terrific time. We know Getty did.

Sadly, this week Mr. Kaige was admitted to the hospital. If everyone can keep him in your thoughts we’d certainly appreciate it. Speedy recovery big guy!

We Moved!

In other news, last spring, Mark and I needed to make some tough financial decisions. It’s sometimes a hard process that I am sure most families have had at one point. We have always been a two parent income, and even with that, we were just skating by. Getty’s care was becoming far more complicated, and our ability to maintain a steady income was almost impossible, especially with Mark being a small business owner. Our home was also not conducive to Getty’s needs. The size and floor plan was making all our lives difficult.

We stumbled upon a house in a neighboring city that offered more space for all of Getty’s needs. Keeping our fingers crossed, it all worked out.

We decided Getty would get the master bedroom. 🙂 Diva!

The walk-in closet is perfect and spacious for all of her clothes and supplies. She has a bathroom in her room which is perfect and so much safer for her to bathe and be transferred to her bed. It has wide hallways for Getty to get around safely. There is room enough right off the kitchen to have her own activity space. She has an easel and all her needed art supplies to make a daily masterpiece. There is a book case full of books, fun games, and school supplies. It makes my heart skip a beat. This space is what she has deserved from day one, and I am just so glad we were able to provide this for her. It really does feel like we have a fresh start.

Our previous house reminded me too much of sorrow and grief that had begun right after Getty’s diagnosis. Even though I am in a different place than I was over a year and a half ago, I still know where my parents were sitting when we had to tell them the news, I still remember where I was when she had her first episode of choking to the point we thought we were going to lose her, and the locations of each and every phone call from specialist after specialist telling us by phone that you can’t do anything to help her, she will die in two years. Talk about baggage. Even though we made beautiful memories in the house the bad times were still lingering.

Moving began right after the race. Literally the next day. We just wanted to get the heck out of there. 🙂 Purging stuff felt amazing. Thanks to Mitzi for coming over to pick up a lot of items we didn’t need anymore. Those items will be sold at San Juan High School’s Rummage Sale on April 14th, benefiting Getty Owl Foundation. You ladies are awesome and I know putting that on is no easy feat. Eileen, Mitzi, Trina, Shannon, and Patti, thank you! More details to come.

We lived in the house for over 6 years and, man, in that time, one can really acquire plenty of stuff — lots and lots of stuff. Patti and Miss Angie gave me good advice, “If you haven’t used it in a year, throw it out!” Even though I cheated a few times, I was able to let a lot of stuff go.

Moving went pretty smoothly. Every night I would drive over as much as the swaggerwagon would let me. Mom, thank you for being my constant co-pilot. I know you were tired and you just kept helping like the soldier you are and I can’t thank you enough. I know you wanted us to have a fresh start as well and I could tell by your pace that you were feeling the need to push, push, push. I love you.

Thanks to Miss Angie and my Dad for helping the moving crew and giving us your time to help us make this transition so smooth.

By Saturday, pretty much everything was in. Patti thank you for being such a big help on Saturday. We knocked out a lot of boxes and I could start to see the light at the end of the tunnel.

Sunday was the day Getty moved in. What an amazing day. We wheeled her around to see the new digs and her eyes got huge. Quite a bit of cooing as well. I have a feeling it was more of a, “Well it is about time I have space” kind of attitude than anything. 🙂 Her room is definitely girly. I infused some blue where I could, but the room is just perfect for her personality and spunk. Pictures to come.

Cooper handled the move great. I think he too was excited by the sheer space. The cats, well that was a different story. They were last to move for a reason. I packed Maggie into the cat carrier, unwilling of course. Richie on the other had was a very willing participant. I think he was just so excited to be a part of something that he ran into the carrier himself. Weirdo! Poppy and Libby, were far too freaked for confinement, so I just threw them into the van. The moment I started the ignition, the craziness began. As I drove I think I morphed into the cat whisperer or a therapist. “You are going to be okay. We’re almost there. Poppy, please don’t get climb on my neck. Libby, you are going to be so much happier when we get to the house.” That was an experience.

So here we are. A fresh start, a new beginning, a chance to start new and more memories in a new place without all the old baggage seeping through the walls.

Getty’s Almost Two!

Our sweet Getty Emelia will be turning BIG #2 on March 25th. It is a feeling of overwhelming excitement. This journey has and will continue to be a winding path. I think what Mark and I have grown to learn is that no one can predict what the future holds for anyone. Getty will be 2 and then she will be 3 and then she will be 4……..do you see where I am going this? She is soldier that is blossoming in front of our eyes and it is an absolute pleasure to be in her graces. She reminds us everyday that all you need is love. She greets us with a smile every morning and as she falls asleep, she always giggles with contentment. Thank you for picking us honey. It is an absolute pleasure.

Our Most Sincere Thank You!

From Kate:

I want to start by apologizing in advance for the late posting about the Getty Owl Run/Walk. After Sunday was complete, I think I can speak for everyone on board, that we were pooped. 🙂 It is also amazing that all of the year long planning was for one day. Just doesn’t seem fair. 🙂 And in pure Kate fashion, once one thing ends another begins, so we are moving into another house this week. We have time right? 🙂

Before I even talk about the amazing day, I have to thank so many incredible people that helped make this happen.

I want to thank our board for giving us all you had that day and more. Getty Owl Foundation is and will always be a 100% volunteer foundation. There are certain times of the year when we put in very long hours to make an event something special and I just want to thank Stacey, Takoa, and Morgan for their love and their willingness to roll  up their sleeves and make a day memorable beyond belief. Thank you for your time and your passion.

Thank you to Chrissy and Sarita who have stepped in to add such richness to our fun little group. We appreciate your kind willingness to help us and we are so happy you are supporting us.

And if you were wondering what all of these lovely ladies look like I thought this picture fit quite nicely.It has been named, “the most awkward picture”, but in certain respects aren’t we all a little awkward. 🙂

Thank you to all of the hilarious helpers on packet pick-up days at Roseville Fleet Feet. I say hilarious because it has been a long time since I have really belly laughed and I seemed as though I  did two days straight with our weekend gang. Thank you to the San Juan HS ladies for all of your help and trouble we got into. Trina, Eileen, Mitzi and Shannon you gals do not disappoint and it was a pleasure to hang out with you all. We froze our butts off, but we did it in style. Thank you to Claudia and Denise. for hanging out and making Saturday a great day as well. I want to also thank trio of wonderful kiddos from Casa Robles  HS: Alex, Dani, Cameron.

Essential thank yous go to Rich and Kellie from Capital Road Race Management and Julie from Nor Cal Ultras. It was a pleasure working with you all and looking forward to next year.

Thank you to Kirk and the staff at Fleet Feet Roseville for hosting our packet pick-up. You were very accommodating and we really appreciate the support.

Thank you to all of the sponsors of the Getty Owl Run/Walk. Without your support, this day could never have happened, period! I am still in awe of the countless companies that stepped in to assist in so many different ways to make this day what it became, a huge success. We are a brand new foundation and for some companies, I know you were taking a big chance on us. My hope is that we have proven to you we can organize a successful family/community centered event. So thank you! Thank you!

I want to thank my husband for being daddy of the year for the past few weeks. Well let’s face it, Mark is awesome and he should get a medal for his support all year long, but for now I am giving him 1st place for the “ability to step in and help during the crazy last few weeks up till the race”. It has been crazy for all the right reasons and it was so comforting to know that he was right there help out with caring for Getty when I needed to make a phone call, write and email.

So you work all year long and then the day comes and you just have this moment of paralysis. “What if no one comes? What if too many people come? What if we forgot something? What if the beautiful weather instantly changes and everyone leaves?” I am sure I had crazy enough amounts of more thoughts like this, but once we got there and started unloading the truck and getting things done, it just kind turned into autopilot and we were rockin & rollin!

We had tons of post-race food, donated by Raley’s and Go Girl. We had the surprise giveaways of yummy owl decorated sugar cookies from the hands of San Juan HS FHA-HERO students. Kids, you do realize they will need to made again next year right? We received so much awesome feedback on the cookies to the point that adults said they were coming back for sure because of the cookies. 🙂

Our Post-race family festival was getting ready and people were still registering and then at one point I just kind of looked around and thought holy! We did this and this is really happening. Our goal of spreading awareness to a captive audience is coming true. It has been built and they are coming. At that point I went into focus mode. If I were to get through this day I needed a coping mechanism and that is my go to.

The kids race was first up and that couldn’t have been any cuter. Dinger from the Sacramento River Cats, several Disney Princesses and our own Hoot the Owl was there to run with the kids.

Grammy Linda, thank you again for the cute costume. I know the kids were so excited. We were as well, folks this is handmade. So cute!

Kids received their ribbons and then it as time to get to the main event. This race was such a community event, it was hard not to see someone you knew. Hugs were plentiful and catching up with so many people I had not seen in years was an awesome experience to the point I forgot that I needed to speak before the race began. Ooops!

I want to thank Sacramento City Councilmember Kevin McCarty for welcoming the crowd and saying some really nice words about our family and Getty Owl Foundation. Now the speaking turn came to me and I stepped up on the ladder to view an insane number of people. I told myself earlier that I was going to keep it short if I thought I was going to cry. I get all blubbering when that happens and that would stink for someone to hear that and then still have to run the race. 🙂 And then something really kind of weird happened. I really felt Getty’s presence with me, even though she was nestled in her bed at home with Mark.  I heard this teenage annoyed  like voice, “Mooooooom talk to them.”  And so I did. I thanked everyone for coming. I told them about SMA and how Getty was diagnosed at 4 months. I told them that 1 in 40 are carriers. most unknowingly.  I told them that is over 10 million Americans. I told them that it is as simple as blood test to determine for their generations to come. I told them that their is hope for our children. Then before I lost it, I thanked them for coming. It was very surreal to a) be  up there in front of the crowd and b) realize that for a moment over 850 people heard Spinal Muscular Atrophy.

The countdown started and they were off! If anyone has been an observer of a start of a race I think you know the feeling of adrenaline I might have been feeling. Pure adrenaline knowing that we had created this day for these people to run and walk. These people were lined up to sprint, jog, and walk the designated route along the Sacramento River. Such a feeling of accomplishment. Click here to check race results.

Post-Race Family Festival went great. There was food and hot drinks, smoothies by Jamba Juice, crafts, vendor booths, and people seemed to be having a great time. I want to thank all of the vendors for coming and supporting our event. It was nice to watch families finish the race together and then extend their day walking around the park.

We had our Getty Owl Foundation booth there as well to hand out information to people interested in learning more about SMA. Thanks to Frances and Chris for holding down the fort, while the rest of us were able to walk around and enjoy the day.

I want to thank all of the volunteers that came to support the event. Fraternities, sororities, Key Clubs and people with no affiliation came to lend a hand. Thank you so very much. You hard work was evident with how clean and organized everything was. We hope to work with you in the future.

This was a very special day. For any first time run I have heard that there is a level of uncertainty, especially knowing how many other races people could have gone to on this day. So to have over 850 registrations and making over $20,000 was mind boggling. We cannot even begin to explain how wonderful this makes us all feel.

We are just so thankful and humbled by the support and we are so excited to get planning on next years race. The 2nd Annual Getty Owl Run/Walk will happen and it will be even bigger and better next year.

So I thank you all for coming to our race. Thank you for giving us a platform to spread SMA awareness and in turn raise money for families affected by SMA and SMA research. We are beyond excited for what is to come for 2012. I think we already started off on the right foot. 🙂