We Couldn’t Do It Without You! Part 1
From Kate:
You know planning an event certainly doesn’t work without support. In my three part series called “We Couldn’t Do It Without You” I wanted to highlight and thank those companies and individuals that have really made both SMA Awareness Month and Hoot the Grid & SMA Art Auction what it will be this Saturday, which is AWESOME!
Getty Owl Foundation would like to thank Adam and his staff at AJF Salon for hosting our SMA Art Auction this August 13th from 7-9pm. We thank you for your support and for believing in our cause.
Thank you to our friends at Honey Agency who are some of the most creative honey bees we have every met. 🙂 We are so thankful for their time and energy to help us promote our foundation and events. And just wait till you see our new website they developed for us, simply amazing!
We would like to thank Justin Berenstein, GSM of Roseville Mitsubishi-KIA. Thank you for your generous donation to help make sure that all of our Team Getty warriors have great t-shirts to wear for our SMA Awareness Walk.
We would also like to thank Dave and Bob over at Capitol Digital Document Solutions who printed all of our promotional materials. And thanks to Anthony who drove over all of the materials to our house. That was very sweet of you. 🙂
I won’t lie, we have simply been blessed with support since Getty Owl Foundation began in March. It has been so wonderful meeting new people and explaining why we fight every day to end SMA. It feels as though they genuinely get it. I think the passion they feel for their own business in some ways allows them to relate to our fight. As I was soliciting for sponsorships and donations, I never got one person who didn’t at least want to hear our story and ask tons of questions about SMA. They could have still turned me down for a sponsorship, but everyone was very gracious and so respectful to the info I had to offer.
So without further ado, I want to thank the following companies for sponsoring our event, donating a silent auction item, donating beverages, donating food, donating their time, donating their services, and last but certainly not least, housing a sweet owl for our Owl Hunt. We cannot thank you enough. In a time when our economy is still shaky, I thank you for your trust and willingness to support a great cause.
Okay do you see what I mean? Amazing! We are simply humbled by ALL of the awesome companies supporting our events. Thank you all. We can’t wait for Saturday!!!!
And just in case you missed anything about “Hoot the Grid & SMA Art Auction” here you go!
8
Aug
2011
1 Comment Aug
2011
Exomotion EASyS Stroller Giveaway
From Mark:
GETTY OWL FOUNDATION is pleased to give a shout out to one of our “sister organizations” in our common battle against SMA and in a unified effort to help enrich the lives of families affected by SMA.
ADDY GRACE FOUNDATION has partnered with Exomotion to give away an EASyS medical stroller on August 31! Click the link for more details!
6
Aug
2011
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2011
Comment
August is SMA Awareness Month in Sacramento! It’s Official!
From Mark:
Last night, I made a presentation before the Sacramento City Council, as Getty’s daddy and also on behalf of Getty Owl Foundation. I accepted a resolution officially declaring August as SMA Awareness Month in the City of Sacramento.
Thank you to Councilmember Kevin McCarty for making this possible and for supporting the cause. Thank you also to the City of Sacramento for your efforts in helping raise SMA awareness.
We are so excited that SMA was recognized in the chambers and equally excited that this is an eternal proclimation, so EVERY August is SMA Awareness Month in Sacramento!
Here is a video capturing the moment:
After the meeting, I rushed home because I knew Getty wanted to see what I had been up to. She cooed with delight.
Hoot! Hoot!
5
Aug
2011
4 Comments Aug
2011
Will You join Us?
From Kate:
To kick off National SMA Awareness Month, our very own Miss Morgan Saunders has made an incredible video to get you motivated about getting the word out about SMA. We have two really incredible events in Sacramento planned for August 13th (“Hoot the Grid and the SMA Art Auction”).
I posted about each event a few days ago and the outpouring of interest has been so humbling. Thank you all for signing up to be a walker, thank you for telling us that you will be attending our SMA Art Auction. Thank you for being a participant. That is what this month is all about. Learning about SMA, talking about SMA, and becoming a warrior and helping us fight SMA.
There is still time to sign up to be a walker. Email us at hoot@gettyowl.org. We hope to also see you at the SMA Art Auction, hosted by AJF Salon. Wine, appetizers, silent auction, and music will be provided.
2
Aug
2011
1 Comment Aug
2011
A Reflection from a Father
From Mark:
My how things change.
At first, we said we wanted a boy. Nope.
Then, we said we will love our girl, but we hope she’s not too frilly. Nope.
We also said, just let her be healthy. Nope.
All the standard prenatal tests were clean. The pregnancy was without flaw. The birth was so wonderful. I cast my eyes upon my precious daughter for the first time and then held her lovingly with Kate as our hearts and eyes swelled with love.
SMA began to manifest at around three months when we noticed Getty wasn’t meeting her movement milestones. We attributed it to slow growth and a larger than average head size.
At age four months, on Friday, July 30, 2010, one year ago today, the floor dropped out from under us.
Every hope we had for Getty disappeared in an instant when the words fell out of the neurologist’s mouth,
“Spinal Muscular Atrophy . . .”
“Type 1 . . .”
“Degenerative . . .”
“Two years.”
That’s it. She has a life expectancy of two years. Not only that, but we felt we have to spend the rest of her short life bearing the cruelty of just watching her strength waste away as this disease robs her of function, robs us of our lives as a family, robs us of dreams for Getty of playgrounds, sports, school, dances, dating, and maybe even holding her hand and walking with her as she starts another stage of her own life with someone she loves.
I recall the silence and shock after we listened to those words in the neurologist’s office. Kate had just told Getty moments before that she can’t leave us, only now to be told things would be otherwise. The look on Kate’s face at that moment was almost indescribable . . . panic, sorrow, grief, despair, horror. No words could or needed to be said.
We managed to get home. That weekend, we cried and cried. We hugged each other. We hugged and kissed Getty not knowing how many more hugs and kisses she would ever get. Thankfully, we managed to get out of the house and silently reflect in the park.
As some of the shock wore off, we wondered what we would do. Getty is completely unaware of SMA. She has no idea what she should be able to do. Unlike us, she has no sorrow or sense of loss. She is happy. Kate and I made a simple vow: keep her happy. She deserves nothing less.
Shortly after D-day, I wrote, “Our poor baby girl is going to grow weaker and leave us within 2 years, and there is nothing we can do.” I also wrote, “All we can really do is love each other as much as possible in the time we have left with our baby girl.” If all of that is true, then since she is age 16 months now, well . . . you can do the math.
This takes me back to my original thought in this post: My how things change.
We hear over and over in the SMA community how doctors often tell newly diagnosed SMA families to “take your child home and love him because there is nothing you can do.” Sadly, in the weakest cases of SMA, there may be little or nothing anyone can do for now. However, as we have learned, in Getty’s case and in cases like hers, there is so much we can do to provide Getty the greatest quality of life while keeping her as healthy as possible, living up to our solemn vow to keep her happy.
Getty loves and laughs. She clicks and coos. She smiles and sings. Best of all, she hoots. She is expressive and smart. She is wise and peaceful, scrappy and strong. She inspires without speaking and motivates without moving. She can hardly lift her finger, yet she moves the world.
Her deep and soulful gaze speaks to me. She tells me she is happy. She tells me she has needs. She asks me for help. She asks me to love and provide. She asks me to teach, to sing, and to fight. I know she understands me though my gaze, “Don’t worry, honey, Daddy is here.”
Kate and I have learned and changed so much together in the past year. That change is more profound than people may think, but I don’t expect anyone to truly understand all it entails. I don’t expect anyone to comprehend our newly found focus, priorities, and motivations. Much of it is a change in spirit, so it is difficult to convey in words, though when I talk to another SMA Dad, I feel a deep and peaceful bond, despite the mayhem thrust upon our lives.
We have learned to advocate for Getty’s care and fight for her needs. We have learned to be her voice. We have learned to plod ahead in the face of ruin. We have learned not to yield to a system of rejection and denial. We have learned to convert despair into hope. We have learned to embrace greater depths of love and humanity. We have learned to better serve a greater purpose.
There is so much more to Getty and to SMA than to “take her home and love her because there is nothing anyone can do.” We have learned and we know better.
In the past year, I have gone from “Dad” to “SMA Dad.”
My how things change.
30
Jul
2011
7 Comments Jul
2011
