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Even Amazingly Beautiful Things Come To An End

From Kate:

After six incredible and memorable years, we have decided to no longer host the Getty Owl Run/Walk. While we are very sad to come to this decision, it is also for beautiful reasons as well. 

We are thankful for Getty’s health and have decided in her interests, to give a back seat to fundraising and community outreach, for now. We will always help families affected by SMA, but for now an annual fundraising event will be put on hold. 

Over seven years ago I sat down and brainstormed. Getty was around 8 months old at the time. Life was going a mile a minute. We were entering a new phase of this SMA journey with a g-tube placement, increased breathing treatments, and a looming winter season that had the potential to harm Getty. 

There was also an overall heaviness that, at times felt suffocating. 8 months in, I was still a new mom, but I wasn’t sure what that meant anymore. I felt cheated out of my role as mom. I felt more like caretaker and first responder rather than given a chance to relish in this new position of motherhood.

It was becoming very clear to me that my relationships with the regular world would just not be in the cards for me and our life. I was realizing that our lives were becoming less relatable.  Stories about suctioning, resuscitating, and fighting with doctors were our norm, and while I am sure I isolated myself, out of pure survival, I retracted from what I considered my old life and tried to find something I could do to feel like I was becoming part of the solution, rather than allow for this diagnosis to control my every breath. 

I sat down and brainstormed about what we could do to make a difference in our community, and also create a place, a day, an event that could help serve several purposes. I wanted to bring the community together, raise money, and selfishly I wanted to feel whole. Out of the barrage of brainstorming blossomed the Getty Owl Run/Walk. 

It would be a day for all abilities and ages to enjoy a morning to support a cause and also enjoy a day to relax and reflect. I wanted it to be fun and fulfilling. 

As a runner myself, I thought, “How hard could it be to plan an annual run?” 🙂 While planning for any event, a run is just logistically pretty crazy to take on. 

Throughout the first year I had moments of asking myself, “What the heck did you get yourself into kid?” There was never a dull moment and while it was thrilling, adrenaline pumping, and often times frantic, what came of it was as close to my brainstorming as possible. Because of amazing friends and family, gracious sponsors, and companies willing to support us at every single turn, our 1st Annual Getty Owl Run/Walk was a success and every year after. 

In the six years of our Getty Run/Walk, we welcomed an average of 900 registrants. We also had the pleasure of working with some incredible companies and organizations that also felt strongly about Getty Owl Foundation and our mission to spread SMA Awareness. 

The last Sunday in February was and will always have a special place in our memories and hearts. It was always positive, it was always fulfilling, and it was a beautiful reminder of how awesome human beings are. Thank you to everyone who showed up and supported our efforts. 

There was always a moment right before the Getty Owl Run/Walk that I got the opportunity to speak to the community. The night before I would run through exactly what I wanted to say. Without fail, the moment I stepped onto the platform to speak, words just came from my heart, not from my head. 🙂 Every year was a breathtaking view — hundreds of people, standing, ready to run but also embrace why we were doing this event.

I felt like every year, people just got it. They understood that SMA needed to go away and they were coming today to show their support in a way they knew how. While that moment was often only seconds, it always reassured me that Getty Owl Foundation was making a difference. We had purpose. 

On February 26, 2017, I stepped up onto the platform and thanked our runners like I always do. I threw out a few SMA facts and talked about how Getty Owl Foundation was making a difference for children and families affected by SMA, as I always do. 

Then my body went numb. It was a disorienting moment to stand in front of so many and explain that there was now a treatment for SMA and that Getty and some of her buddies would be getting the treatment in the very near future. The cheers and tears that came from the crowd was an experience I will never forget. What an amazing time we live in to be able to announce such a scientific breakthrough. 

Since that day, Getty has been receiving the treatments and she is doing remarkably well. So far, no complications and so far Getty is retaining some strength that has been such an incredible blessing. We look forward to the future, her future. 

As we moved into summer, it was becoming quite clear that we might have to rethink what we prioritized. With regained strength has come new considerations on therapies and other resources for Getty’s care. 

Getty is now in second grade and her education is becoming far more rigorous than in years past and I wanted to make sure nothing was being compromised for her. 

I sat down in the summer to prioritize other aspects of our lives and while I tried in every way to hold onto our annual Getty Owl Run/Walk, it was clear that the time to continue to put on the run would just not work. I was not going to put on the event for the sake of having it. The moment I thought the integrity of the run might be compromised, I knew it was time to walk away. 

So that is where we are. What an amazing situation to be in! Getty is receiving a medical treatment to help her fight SMA, and there isn’t enough time in the day to care for her and put on the Getty Owl Run/Walk. Wow, what beautiful problem to have. 🙂 

Thanks to everyone for being so kind and giving of your time. Thank you for signing up and running/walking. Thank you for helping us raise over $250,000. 

All of the money raised is 100% put back into the Getty Owl Foundation. You have helped us raise funds to help grant iPads for communication/educational purposes. We have been able to purchase life saving medical equipment and supplies for families affected by SMA. Funds raised has helped us gift back-to-school bags, travel equipment, communication devices, and allows us to continue to help SMA families into the future. 

Thank you! Thank you! Thank you! 

If I can leave one message to everyone reading and that is, “You make a difference!” All non-profit organizations depend upon the generosity of the community to make a difference. 

Many are 100% volunteer like Getty Owl Foundation. So many amazing foundations that have found a need in a particular community and work their butt off to make a difference. Please consider helping in any way you can. It could be a river clean up, an annual run, donating to a food bank, sponsoring a family for the holidays, donating used goods, etc. Please continue to support organizations that want to do good. You make a difference for so many! 

While we will no longer be hosting Getty Owl Run/Walk, Getty Owl Foundation will continue to support families affected by SMA. We will continue with our mission to educate the community and advocate for families affected by SMA. We will continue to strive to help find a cure for SMA. We will keep on, keeping on until SMA is extinct. 

Below are just a few of our favorite memories throughout the years of the Getty Owl Run/Walk. It was always a perfect day, it was always a day to celebrate and reflect, and it was always a day that Getty could ride like the wind in her flying stroller spaceship. 🙂  

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Halloween 2017

From Kate: 

We hope every one had a safe and fun Halloween. Getty decided to be Wonder Woman this year. I would argue that she IS Wonder Woman, but at least she was willing to dress up as her role, finally after 7 years on this planet. 🙂 

The Saturday before Halloween, Getty was invited to a Halloween party at her friend’s house. That entire sentence just gives me the happy chills. She had a lot of fun and enjoyed her time hanging out with her friends and kids her age. It was awesome for her to be invited. This time of the year is always so sketchy. I want her to experience fun things, but the worry of fall/winter germs is looming, so sometimes I am a buzzkill and say no. BUT, this time I said yes and she had a great time and made some great memories. 

Halloween was a blast. Getty got to participate with her cousins and even dad dressed up for the festivities. She said, “trick or treat” and “thank you” at every house which was awesome for many reasons. 1) We were out trick or treating in the first place. 2) Getty was healthy enough to go. 3) She loudly said, “trick or treat.” 4) She loudly said, “thank you.” 5) Girlfriend made a killing in treats. 🙂 

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Thank You Dutch Bros.! Thank You Community!

From Kate: 

I would like to wholeheartedly thank the Grubbs Family, Dutch Bros. Coffee, and our great Sacramento Community for helping raise $6810, in the Buck for Kids event on September 29th! It was a HUGE success and we are so thankful for all of the continued generosity of Dutch Bros. Coffee. Thank you for all that you do for local causes, such as ours. We are so humbled by your constant support and love. 

Thank you to all for stopping by and purchasing a drink, or two. We are so thankful! 

What I know for sure is that this holiday season we will be able to gift more iPads to deserving children and adults affected by SMA, and that makes our hearts sing! 

Thank you all!

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Sweet Reagan

From Kate, 

We are absolutely heartbroken to announce that one of our incredible SMA warriors passed away this past week. GOF board member Shannon, and her amazing husband, Randy, said goodbye to their little lady Reagan. We mourn the loss of Reagan and we hope that with time, comfort will come to Shannon and Randy and their extended family. 

It has been difficult to put into words what has happened this past week. While all SMA children and adults are just the best human beings in the world, Reagan was a part of our innermost circle. With only a driving distance of forty minutes, we were able to have a more intimate relationship with the Sinkiewicz family. They are dynamic and fierce warriors for their Reagy. They dove into this abyss of what the SMA life includes and they just went in head first and never looked back. They brought the outside world to Reagan and she flourished. She was fulfilled, sassy, and extremely welcoming to anyone with her beautiful smile. 

Thank you Shannon and Randy for sharing Reagan with the world. Thank you for welcoming us into your home and giving so many people a chance to meet Reagan. Thank you for allowing others to gain knowledge and in turn gain a sense of empathy that perhaps they never had before. Reagan had such an infectious way of gaining attention. Her eyes drew you in the moment of meeting her. Her smile and coos were mesmerizing and she was such a force of persuasion. Her spirit beamed and you knew that all was right in the world when you were with her. 

We promise to forever care for you all. We promise to make sure that Reagan continues to be present in everything we do. We promise to make sure that our community who has held your lady in their thoughts, continues to positively make an impact. 

It was excruciating to get the news of Reagan’s passing. It was difficult to come to realization that Shannon and Randy will not have the ability to love on her physically anymore. They just relished in loving her and giving her everything possible to thrive. They created a world that was full of wonder and excitement. Knowing it has been stripped away, it just isn’t fair. We miss her and we are just so incredibly sad. Just so sad. 

To Shannon and Randy’s extended families we send our love and we stand with you during this time of grief. 

Reagan, your beautiful spirit is in all of us. I can only speak for myself, but I have a feeling there are many people throughout the world that are moving forward with a little more purpose to make this a better world. An increased purpose to make sure that everyone feels included. An increased purpose to make sure that your life and your story will continue to be told. I can’t tell you how many times we have been greeted by a curious hummingbird. They hover just long enough to say hello and then they are gone. I feel like it is your way of saying hello. One actually hovered near my face and it brought a smile, one that I had lost the last week. Thank you for bringing it back. 

If you would like to help support Shannon and Randy during this time, please consider donating to their fundraising page. Click HERE for more details. 

 

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Back to School Giveaway Announcement!!!!!!

From Kate:

I would like to thank all of the awesome families who entered each and everyone of their amazing kiddos!

I am so happy to report is that after the giveaway was announced, I had two really incredible donations that helped us up this giveaway from 6-14! People are just good and I would like to thank both the ever present and supportive, Bauernschmitt Family and Hunter Has Hope Foundation for their kind contributions to this giveaway! 

I hope to make this giveaway an annual event. We hope to increase the amount next year.

I would like to introduce you all to some really fantastic kiddos that will be receiving our “Oh, The Places You Will Go!” Back to School Giveaway. 

To all of our SMA kids, have a terrific school year and take life and your studies to new heights! 

 

 

 

 

Contents of the Bag:

Whiteboard

Dr. Suess’s Oh, the Places You Will Go!

Orange Circle Studio 2017-2018 Yearly Planner

 Crayola Twistable Colored Pencils

Crayola Watercolors

Crayola Markers

Crayola Twistable Crayons

Crayola Dry Erase Markers

Crayola Slick Sticks 

Ticonderoga My First Pencils

Pencil Box

Elmer’s Glue Stick

Adaptable Scissors 

Pencil Sharpener

8G Owl Flash Drive 

Getty Owl Foundation Water Bottle

Getty Owl Foundation Tote

 

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