Getty Owl Foundation

There is a Story Behind Every Picture.

From Kate:

Thursday was no different from most. I got up early to get some things done for the run. Getty awoke from her slumber a couple of hours later, only to yell at me all the way down the hallway that the princess has awoken. I wait patiently for my 3rd cup of coffee to be done, so I can scoot to her room.

I get there to see some big blue eyes looking back and a morning squeal. Mama loves those squeals.

Our daily routine now has included Tinkerbell. Any Tinkerbell movie will do, but she has grown profoundly accustomed to these movies than others. Before she wouldn’t care what was put in front of her. Now she knows exactly what she is watching and when to giggle and when to sigh, etc. My little girl is growing up.

Since birth we have slept together. She has always been on my left. It is like we are an old married couple that have our routines even in the bed we sleep in. I know exactly when she needs to be repositioned. She knows when I am faking sleep, because she chats at me. I know when she is falling asleep because she makes the most subtle of sighs which tells me the time has come.

In the morning before we get the day started we do her first of three breathing treatments. They are spread throughout the day. Each treatment lasts about an hour. It consists of suctioning, a cough assist machine, a nebulizer if she needs it, a chest percussion machine that shakes everything up in her lungs, so hopefully we can get her airway and lungs nice and clear for the morning, etc. There are sets of things, brush teeth, etc, etc.

Anyway by the end she is dry, clear, clothed, and ready for the day.

I do my best to keep as much variety of play activities in the house. Today I thought it would be fun to draw. I had set up the coloring easel, her PVC pipe arm sling contraption was in place and all I needed to do was scoot her in and “we” could draw. put her arms in her slings. Asked her what color she wanted to draw with and then I picked one for myself.

What transpired was heartbreaking, scary, and  incredibly magical.

Getty started to cry. I mean like cry to the point of desating her O2 into the low 90’s. And her heart rate went up into the 150’s. For perhaps non-SMA families this may not mean much, but for us and for me at that moment I was calmly freaking out. Mark was not here. I was on my own to “fix” this. So you go into triage mode. Suction to get rid of the secretions so she does not choke or aspirate on the saliva. I had her cough assist ready just in case I needed to simulate coughs to really get down onto her lungs to pull up anything that may be down there. I talked calmly to her to see if I could get her focused on my calm voice and reinsurance that everything was okay.. Was she hurting  Did I do something when I transferred her to her portable chair? Did she have an ear ache. checked her ears. Did she have a temperature? I checked, no, wasn’t that.

I finally figured it out after I left the marker in her arm sling and moved out of her view. She just wanted to draw by herself. The tears dried, the coos came back, and her sweet little hand swung like she was flying like a bird.

I just sat there and cried for awhile. My baby was fine, so the adrenaline of the feeling of emergency was slowly leaving my body but filling it with extreme exhaustion. But I was mostly crying because she is a little lady and she does deserve her special space to create on her own. Granted it may not be the traditional sense of the word, but it is her’s and at the moment she needed mama to step back. I was so proud of her and I was also sad that she was getting older and that she didn’t need me to hover.

Her final work was an absolute masterpiece.  I could tell that after she was done and I  peek around to see her face, she was full of confidence and ready to show it off. 🙂 I am so proud of her.

Here is Getty’s masterpiece.

After I left her view I videoed Getty creating. There is a point in the first video that she stops for a time. I originally thought she was finished drawing but at closer look, I realized that she was keeping her marker on the page longer to make color circles. So smart.

My girl is growing up and now I need to continue to learn more aspects of her as a whole so I can help her grow in as many ways as she wants. I am a lucky mama.

Here we go……2nd Annual Getty Owl Run/Walk

From Kate:

I am so very excited to announce the 2nd Annual Getty Owl Run/Walk is Sunday, February 24th in Sacramento at Crocker Park.

Planning a run is no easy feat. It seemed as though once last year’s run ended the planning  for this year’s run began. Getty Owl Foundation puts on several events throughout the year. I’ll be honest, the run is very special to me for a couple of reasons and I feel like with each passing year it will be even more of a labor of love.

Having so many people in one place to celebrate family and community makes my heart skip a beat. Knowing that every single person attending will know or hear something about Spinal Muscular Atrophy is something you cannot put a price on. To think that in the very least our participants will take the knowledge they have gathered and tell someone else one day. That is cool!

There are some really great additions to our race this year. First of all we are going “tech”. Our Getty Owl race shirt will be tech to all who register. I wanted to do this so bad last year, but we simply did not have the budget for it. But this year, it’s on! Tech shirts are lightweight and breathe well while you run. And they seriously last forever. We have a new race image on the front that I know people are going to love.

The race routes will remain the same from last year. We received some great feedback from runners and walkers alike that they enjoyed the scenic view of the Sacramento River.

Times for races will be the same:

1/4 mile Kids Run: 8:05am

5K & 10K Run/Walk: 8:30am

Okay so let’s talk about the 1/4 mile Kids Run. We have been overwhelmed this entire year with such gracious donations from all kinds of companies/organizations. So we decided to take three of them and make them giveaways. Promptly at 7:55am-ish Dinger, from the Sacramento River Cats and I will be pulling 3 lucky kid’s names for some really cool prizes.

4 Tickets to Fairytale Town

4 Tickets to The Sacramento Zoo

And…………………….

4 Tickets to Disneyland!!!!!!!!

Cool huh?

In order to be in the drawing you must sign up pre-registered for the 1/4 mile Kids Run. Meaning that you will not be in the running for the tickets if you are a late-register or register the day of. So if that isn’t incentive to sign up soon, I don’t know what is. Last day to pre-register is February 17th.

This year will have a lot of the same aspects of last year. All registrants will receive a tech shirt, goody bag, and post-race hydration and nutrients.

We will again have a post-race family festival. Vendors are being added pretty much every day. We want to thank the companies that have made it a priority to come support the race and our foundation. Here is the list so far of the incredible companies at the festival.

Age group winners will be announced and will receive a custom medal and gift for their hard work and accomplishment.  Award ceremony will begin at 10:00am in the park.

For all other event details either click here. Or go to the top of the page and find the “Events” Page on the website that has ALL the details from Race Info to Post-Race Sponsors. 

I want to take the time to thank several people and companies that have helped the Getty Owl Run/Walk possible. I would like to thank our crazy Getty Owl Foundation board of directors. Crazy meaning good. You all keep me grounded and I appreciate that and all of your hard work.

It has been a pleasure to work with Kellie and Rich from Capital Road Race Management and Julie from Nor Cal Ultras. Thank you all for your help and advice. So excited to put on another great race with your support. 

Last but certainly not least, our sponsors. When organizing any event, if you don’t have businesses supporting your efforts, an event just can’t happen. I would like to thank our major sponsors:

California Family Fitness 

Raley’s Supermarkets 

The Honey Agency

Fleet Feet Sports

92.1 K-Hits 

We would like to also thank many great sponsors that have helped make our upcoming 2nd Annual Getty Owl Run/Walk a success.

Check out these sponsors.

With the race only 1 month away I wanted to let everyone know who  is reading this post that we appreciate your support. We created Getty Owl Foundation to be a part of the solution. We wanted to do what we could as a family and as a foundation to help fight Spinal Muscular Atrophy. SMA is cruel. As Getty gets older, she loses the very simple aspects of life that we may all take for granted. Eating, swallowing, standing, walking, jumping, hugging, talking, smiling….. We want to help end this disease not only for Getty but for all children/adults diagnosed with SMA. Even with the extensive list I have mentioned, in the same breath, there is so much hope on the horizon in regards to research to help find a viable treatment and/or cure.

We were told that Getty would unlikely see her 1st birthday, let alone her 2nd. As a family we are so proud of our little owl, rather little lady owl, she is surpassing all the statistics and there is no stopping her. She will be turning 3 in March, Hoot! Hoot!  This year, not only will Getty be in attendance for the run, but so will many of her SMA friends that are also defying the odds. We are so thankful to be in such good company. We look forward to walking together in solidarity that our kids are warriors and they love life and they do deserve a cure.

With the accompaniment of technology, Getty can speak with the assistance of a computer and very soon Getty will be traveling around with the assistance of a power chair.

That is what this event is about. Educating the public about SMA and helping to raise money for research that one day, someday soon researchers will find a viable treatment or cure for all of our kids and adults and those that have yet to be born.

We hope you register for our 2nd Annual Getty Owl Run/Walk.  We hope you have a wonderful time. We hope that you walk away from the event knowing more about SMA than you did before and we hope that you take what you have learned and tell others. Knowledge is very powerful.

On behalf of our entire board of directors at Getty Owl Foundation, we thank you for helping us be a part of the solution.

Oh and it is the end of February, it will be cold, dress warm. I have already told mother nature not to rain. So we are covered. 🙂

Hope to see you there. Register HERE is you are ready to go!

The Lonely Goatherd

From Kate:

At some point over the Christmas break, Getty and I watched The Sound of Music. I really enjoyed it as a kid, even though I was never able to quite finish it, due to its duration. But you know Getty certainly did. She was glued.

Julie Andrews, hands down is one the best singers of all time. Her passion and animated songs are so very timely and beloved. So when it came on at some point in these past few weeks, well I thought maybe Getty would enjoy it, purely for the uplifting songs. SHE LOVED IT! I was so happy. Her eyes were glued to the TV and when Julie Andrews would hit those high pitches, she was just so excited. A few of the songs she liked more than others, as you can gather.

She loves Do-Re-Mi. That is one that her mama can hang with. I can also sing, (not good mind you) Sixteen Going on Seventeen. There were times during the movie when she would look up at me as if to say, “how do you know what they are about to sing mom?” That look is priceless. Then she goes back to watching the movie. She had a few meltdowns, as to be expected after a song was over. We are still working on that. Oh and she also really likes My Favorite Things.

But there was one in particular that completely got her attention. Since that night I have purchased the album and found the best Youtube version of the song for her to see and hum to. The Lonely Goatherd is the cat’s meow right now, or maybe the goat’s yodel. 🙂 I am doing my best to yodel, not quite how Julie Andrew’s would have done it, but I am trying my best. Getty LOVES this song and add a few puppets, SOLD!

So I am guessing perhaps Getty and I will be getting into music theater soon. I will need to find another fun musical for her to swoon to, just like The Sound of Music. Suggestions are very welcome.

Here is the best video I could find online of the song. I give you The Lonely Goatherd. 🙂

http://youtu.be/7_PJPDMXHOw

Happy New Year!

We hope 2013 brings happiness, warmth, serenity, openness, love, friendship, and humor.

2012 Family, Foundation, & Year-end Charitable Contributions

From Kate & Mark,

This past year has been an absolute blessing for our family. We got to share and celebrate Getty’s 2nd birthday. Our little lady continues to grow leaps and bounds. Following SMA protocols and her specialized diet, we have been lucky enough to keep her away from the hospital, aside from her infrequent routine doctor visits.

Getty now has a teacher she loves, who comes to the house every week. They sing, read, and are silly together. This next year we will be talking Pre-school!!!!!!!

Getty wakes up with a smile on her face, every morning and from every nap, that warms our hearts like you would not believe. She loves life to the fullest and as she grows, only gets more funny and cuter. She can be a stinker, but in a sarcastic way, which we love and makes us giggle.

This past year we were able to go to the zoo, a baseball game, the Russian River, the forest, Fort Ross, the ocean, restaurants outside, touring Christmas lights, and many, many walks to the duck pond and park. Getty got to meet  her cousins, uncle, and aunt this summer.

Getty was also able to meet two new SMA friends:  Shira from British Columbia and Kaige from Rocklin. She also got to spend time with her constant buddy, Aaron, and her new friend, Hayden. It is beautiful to have Getty around other SMA kiddos. It is a very precious time for both parents and kids to hang out and relish in our common bonds.

This year has been a year of change for all of us. We moved to a new place — one that gives Getty space to grow and the accessibility to move around. After months that turned into years, Getty now has back up equipment for all of vital needs, which is more than comforting and a relief for us. Also, with the help of an amazing family, we also have been very fortunate to get a van that is safer for Getty and gives us more accessibility and peace of mind.

After a brief trial this past spring, Getty now has the Tobii eye gaze. This in itself has changed her world in so many ways. Soon, she will all be able to communicate with the world. We are also laying the groundwork for Getty to trial a powerchair.

So many things to be thankful for and so many things to look forward to.

GETTY OWL FOUNDATION

As a foundation, we have been wonderfully excited with this year’s accomplishments. We have made great strides as an all volunteer foundation that does not pay for salaries or unnecessary administration. (Notably, not one penny of Foundation funds go toward Getty or our family.)

While it is difficult to balance caring for Getty and organizing events, we knew raising SMA awareness, helping affected families, and helping accelerate research for a treatment or cure was very important to us. One of the main points we hope gets across is that SMA can happen to anyone and if we can educate and support, then we have helped me part of the solution.

Hosting our 1st Annual Getty Owl Run/Walk was such an amazing experience. Over 900 participants, runners, and walkers took part on a brisk February morning, will be a memory we will always hold dearly to our hearts. The Run/Walk raised over $20,000. We already opened registration for our 2nd Annual. Hope you can join us.

In addition to assisting many SMA families, we are also proud to make a $10,000 grant to further the gene therapy program at Nationwide Children’s Hospital. At this time, the gene therapy program offers genuine hope for a cure.

Our 2nd Annual Hoot the Grid Art Auction was a successful in-house and online showcase of beautiful artwork from our incredible SMA kiddos and their families.

As a family and as a foundation we have had three goals: (1) spread SMA awareness, (2) support affected families; and (3) be part of the solution to help cure SMA. We are very happy to accomplish all of these this year and in years to come.

We would like everyone to be a part of this effort and ask that you please consider Getty Owl Foundation for your year-end charitable contributions. Every penny counts and we could not do what we do without you!

Thank you!