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We Are Out To Discover Giveaway Announcement!!!!!

From Kate:

We would like to thank everyone who participated. We are so thankful to be able to have a vehicle for helping fellow SMA families. It was so great to get to know many families in the SMA Community. Thank you all for your time.

We hope to be able to do another giveaway just like this for the upcoming school year in September. So keep a look out near the beginning of September. 🙂

We hope this giveaway was helpful. Again, I know when we were up and mobile with external power, the world just kind of opened up for Getty and our ability to take her places to explore.

We hope you all have a great time this summer. Sounds like you all have some very fun activities planned for your kiddos. Enjoy!

Here are our 6 recipients.

Randy Final

 

Kayden Final

 

Tenley Final

 

Alannah Final

 

Emmett Final

 

Madison Final

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GIVEAWAY: We Are Out To Discover!

From Kate:

As the end of school year draws to a close, we take pause in how incredible this year has been for Getty. Many firsts for our little lady. Many memories made. Much growth in all kinds of ways. With the end of the school year we try our best to get out of town to basically breathe for the year. It gives us all a chance to change the scenery. Our lives kind revolve around the academic school year, as many families do. Fall is the beginning of school, new people, new things. Near the end of fall we start to move more inside and we basically shutter off our lives from November-April. When RSV season rears its ugly head, we need to keep Getty as healthy and safe as we can and most of the time that means we cannot venture out into the rest of the world. We just completed our sixth RSV season and while it always seems daunting to retreat inside the four walls of our home, we have seemed to nail the idea of truly living life enclosed. It is amazing how much life you can conquer while sequestered for months on end. 🙂 However isolation never truly gets comfortable and I find that near the end of March, everyone in the house is hankering for some sun, breeze, and new places.

We are lucky enough to be able to find little niches during the summer to get away, recoup and enjoy the summer. In order to leave the house for hours/days, we have to have backup power for all of Getty’s machines. It is a nonnegotiable. It will always be a nonnegotiable. Most of Getty’s machines come with back-up battery power, but it seems that those that are the most important either do not come with this option or that the power offered is not powerful enough to sustain a long trip in the car. So a battery/inverter system is essential for safe travel.

Many aspects of an SMA life are not paid through insurance. Many life saving options are either denied for various reasons or they aren’t even considered. Out of pocket expenses can truly add up and they can become a financial burden.

So we want to help some SMA families get the back-up power they need to get moving this summer and lessen the financial load in powering up life saving machines for their amazing warrior kiddos. We are having a giveaway!!!!!!!!

 

We will be giving away 6 battery/inverter systems and a getaway quilt to help some SMA families get moving this summer!!!!!!!

 

How to enter:

Email one submission to hoot@gettyowl.org with the following information:

-Your first and last name. 

-Your address.

-Your child’s name.

-SMA type. 

-What special trip would you go on this summer to make memories if you had this system? 

-Submit a picture of your child and/or entire family. 

 

*No purchase necessary. One submission per household. All entires are available for submission starting today (now), May 31st-June 7th (6pm, pacific time). 

* The six SMA families will be chosen at random using random.com. All winners will be announced on June 8th. If you have any questions, please feel free to email us. 

 

-A BIG thank you to fellow SMA mama Barb for making such beautiful quilts. Thank you to all of our donors for giving us the ability to purchase these battery/inverter systems for SMA families.

 

 

 

 

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Getty’s Door To Inclusion

From Kate:

Getty’s academic journey has been a very exciting road. She is now nearing the end of Kindergarten and as I look back, she has grown heaps from the infant program to pre-school and now to kindergarten. She is academically ready for 1st grade. She is also knocking it out of the park socially. With the help of the telepresence robot called VGo, she is able to connect, communicate, and develop relationships.

Technology can be a great burden, but it can also be a welcome addition to a little girl that just wants to be one of the kids. This technology is giving her the ability, power, and independence to do so. We have had some incredible people along the way of Getty’s educational journey. Many have been here from the start and they were/are huge advocates in assisting with Getty’s needs and abilities.

A video was created last year by an amazing man named Larry Edelman that truly captured Getty’s pre-school experience. The hope was to offer counties, districts, teachers, advocates, parents an option for obtaining as close to inclusion experience for their child that may be homebound temporally or permanently. The video was a huge success and I tip my hat to Larry who was able to really capture Getty’s early experiences with the VGo and her classmates.

This past year Larry came back to do an update and…. well…..this video is amazing. I have no other words to say. Please watch, please share, and please keep in mind that education should be for all kids. True education, inclusive education regardless of special need.

Enjoy

 

*Larry, you are wonderful and a loving addition to Getty’s village. Thank you for your kindness and attention to detail.

 

Click below!

Getty’s Door to Inclusion on VGo

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What Would You Do If You Could?

From Kate:

Getty,

What would you do if you had no physical limitations? Would you squeeze me tight? Would you run and jump and skin your knee? Would you play in the dirt with reckless abandonment? Would you create constructed works of art? What would it mean to you if you had a day to just be what most kids get to experience every day? Would you kiss and hug us all? Would you dance? Would you twirl? Would you kick a soccer ball?

When I have days that feel sad or out of sorts, I have to be honest and say that sometimes these thoughts race through my mind and they hurt my heart.

But without fail you find a way, your own Getty way of telling me to calm my heart. You have an incredible way of telling me that those “things” are just extra. Those things, while they may sound and look fun, do not define what this life is about. What this life if about is this moment, this second, and nothing more. I look into your eyes and you wise demeanor tames my weakened heart. That twinkle tells me that all is and will be okay.

So I rejoice in what is beautiful. My heart feels full and content that you are such a happy kiddo and what life has and will offer is and can only continue to be spectacular.

“Now if you would just change my movie I would be a super happy kid. Mom, seriously you are driving me crazy.” exclaimed Getty.

Can’t dwell for long. Back to regularly scheduled life. 🙂

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5th Anniversary Getty Owl Run/Walk

From Kate:

It was my intention about a month ago to recap our 5th Anniversary Getty Owl Run/Walk. What I am learning more and more about life is that the best intensions sometimes don’t come to fruition exactly when you want them to. Luckily, with social media I was able to post all kinds of pictures and moments through Facebook and Instagram. It is so nice to have the ability to post pictures immediately while the event was taking place. It was so cool to see other pictures people posted as well. It was a happy day and it was such a treat to see moments captured from all kinds of people that day. Thank you for posting and sharing the day with us.

I would like to thank my friend Paul Le for taking some great pictures of the day. Every year is special to all of us for so many different reasons. The biggest reason is to have time to spend with our community and friends. Thank you Paul for spending your morning with us and giving us some incredible pictures of our amazing supporters.

BTW, Paul also is our creative spark every year with our event image, medals, and advertising. He is so creative and such a kind soul. 🙂

Here are a few:

5thAnniversaryGOF

Thank you all for coming. Thank you for bringing your family and friends to our event. While we put a lot of time and effort into each year, however, our Getty Owl Run/Walk is not possible without our community’s support. We broke our attendance goal this year and welcomed over 1,300 registered participants.

Because of our community, supportive businesses, and gracious individuals that believe in our cause, we were able to raise over $64,000 this year. In five years we have raised over $190,000 to help support families affected by SMA and help advance the progress of research to help find a viable treatment and/or cure for SMA. There is so much hope and we are just so thankful for being able to do something significant to help end SMA.

I look forward to this day every year. While it is a day to spread SMA awareness and drive home the knowledge of the #1 genetic killer of young children, it is also a day that we celebrate family and it is a day we celebrate our little girl.

Getty turned 6 on March 25th. Surrounded by family and friends, she blew six candles out on her beautiful cake and we celebrated. Each year both the run and her birthday gives us a chance to see how much our community loves and adores our little lady. We tell her that on the last Sunday of February she becomes our city’s honorary mayor. We know she loves the title and the attention. 🙂 What is most significant for us as a family is to see that not only is our run a place for fighting SMA, but it is a chance for people to see and meet Getty and to understand that regardless of diagnosis life is attainable and celebrated. Regardless of limitations, life is fulfilled and explored. Regardless of possible prognosis, there is always time for love and being present. Getty has helped open our eyes to what can be possible in this life. I hope for many at the run, you also got a chance to be bit by the optimism bug. 🙂 Life is such a gift and it is so powerful when you have loved ones near and adventures to plan.

Thank you all for coming and being present with us. Hope to see you next year at our 6th Annual Getty Owl Run/Walk on Sunday, February 26, 2017!

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