Getty Owl Foundation

Lullabies for Getty

From Kate:

As I drove home from work one day in October I was having a conversation with Stacey and she was telling me about a band called The Damnwells and the lead singer Alex Dezen and how he was awesome and that her favorite song was from their band and then weirdly enough Getty’s name popped into the conversation. In such a crazy turn of events, it turns out that Alex and his lovely wife Angela had been working on some songs for a lullaby album, but didn’t have a name. Then I heard those three words and I just about drove off the Capital City Freeway in rush hour traffic. They wanted to call it “Lullabies for Getty“. Read this post if you need a refresher on the story.

At that moment I realized that people were actually following our story. I wasn’t just a mom devastated by a diagnosis in isolation. Getty and her story were affecting people and I instantly felt a sense of comfort knowing that there were angels among us finding creative ways to help our family and the cause.

I dove into The Damnwells, learned as much as I could, (They are awesome!) before ultimately meeting both Alex, Angela, and Morgan from The 818. I have said this before, but the moment we all starting talking, it felt like old friends had picked up a conversation from long ago. It just felt great to spend time with them and get to know them. All three are terrific human beings and to think that they were lending their talent to help us find a cure for SMA, well I just can’t explain how incredible that feels. All I can say is that I am entirely grateful for their love and their compassion and their sense of purpose to help.

I got a chance to hear a few of the tracks early and all I did was weep. Each and every track made me think of Getty in some special way. When I originally thought of a lullaby I thought of old school songs that had a cow and an old man and something jumping over the moon. Um……these tracks are not like that. They are absolutely gorgeous songs with such beautiful meaning and could easily be played in other genres other than children’s lullabies. Getty listens to the tracks before going to bed. I tell her that “Uncle Alex and Auntie Angela want to say goodnight” and then I hit play. Perhaps one day she will start to hum with the music.

Please take the time to sample each song. Simply gorgeous!

There were many people who made this album possible and I would be remiss if I did not mention them. Thank you to Alex Dezen, Angela Dezen and Morgan Shanahan! Thank you to the Honey Agency for all of your time and effort! Thank you to Stacey Ball who seems to know everyone and I love you! Thank you to The Damnwells, Neal Ostrovsky, Ryan Marshall, The Gaynor’s, The Prendiz’s, and Wes Kidd at Red Light Management.

So tomorrow (April 5th) the album will launch. Simply go here and purchase the album. Proceeds from the album will be going straight to the Getty Owl Foundation to help us find a cure for SMA. We would be so appreciative if you spread the word on this fantastic album! Let’s send this album to the Billboards top 100. A girl can dream, can’t she. 🙂

Upcoming Getty Events!

From Kate:

I have missed several Team Getty Runners posts in the last few weeks. There have been so many things going on that I have had to put it off. We are getting new runners signing up everyday. It is so exciting to get more warriors willing to raise money for research and also training for a marathon which is not just a hop, skip, and a jump. You are ALL true SMA warriors, sweat and all. We are close to reaching the 100 mark now so next Wednesday I will be highlighting three awesome people, instead of the usual one. I need to catch up! 🙂

So today is about 3 amazing events going on in just 2 days! Like I have said before, there are angels that have been so gracious to our family. They continue to astonish us with their time and effort to find new ways to help Getty.

Chevas Rainer, a dear friend of ours is putting on a free concert in El Segundo, CA. Chevas thank you so much and all who have joined in to make this event happen. We hope it is a huge success!!!!

Here are the details:

Friday, April 1 (Tonight!!!!!)

-A Benefit Concert for Getty Owl Featuring Samantha Stollenwerck

Getty owl concert flyer

Our awesome Team Getty at NSJHS are doing it again. Last fall’s rummage sale was a huge success and this spring is going to be even better. Come out and find some great wares. In addition, our friends at the Kiwanis Club of Citrus Heights will be hosting a Spaghetti Feed in honor of Getty in the cafeteria. Have some terrific spaghetti and help raise money for Getty.

Saturday, April 2nd (Tomorrow!!!!!)

-2nd Annual Rummage Sale & Kiwanis Spaghetti Feed Benefiting Getty

Rummage Sale: 7-2pm

Spaghetti Feed: 6-8pm

New San Juan High School’s Cafeteria

7551 Greenback Lane, Citrus Heights, CA 95610

Spaghetti Feed Tickets are $10 each @ the door.

A Bit Of Wonderful

From Kate:

Last month we had the absolute pleasure of meeting and working with the Faix family. Sarah and Rob from Bit Of Whimsy Dolls chose Getty as their benefactor for the month of February. We were simply beside ourselves in delight. How nice of them to have picked Getty and to help raise much needed funds so we can afford to outfit our van with mobile power.

In the meantime, while the month of February was underway and the orders were coming in we really got to know the Faix’s. They are such a nice family and so generous. Every month this year they choose a cause to donate funds from a particular sale of doll pattern. February was a sweet owl named Olivia.  This month they are donating 50% of the Koby Koala Pattern to the Australian Red Cross to help with flood and fire relief efforts.

I hope everyone reading continues to support such a great family and company. Getty now has three new friends, two owls named David and Fergie and one dolly named Devyn and I am sure if Grammy has anything to say about it, her circle of Bit of Whimsy Dolls will continue to grow.

Thank you Sarah and Rob for being so kind. Because of your gracious donation we were able to get everything necessary for the van so we can travel and have the appropriate power to all of Getty’s machines. And with the weather getting better and hopefully RSV season coming to an end, traveling is our #1 priority.

So here is Sarah, Rob and kids!!!! Faix children, you’ve got some awesome parents!!! We love you guys!!!!!

Memories In Our Hearts Forever

From Kate:

I never knew that a 1 year old’s birthday could knock you out for the remainder of the weekend, but Getty’s Party DID!!!!

The morning started with some last-minute decorations and a quick glance at Getty’s facebook page. Stacey’s idea of having a virtual birthday party for Getty was just terrific. Although, I will say I wasn’t sure how it would all fall into place. Would people really make videos for Getty? Then I saw this video first and I knew today was going to be magical. And it was!

Getty is a late sleeper. So most mornings I can get some things done around the house before she wakes up, but Friday all I could do was watch video after video after video! I got up from the laptop to grab another cup of coffee and ran straight back to the couch to watch more. Getty’s wonderful, amazing cousin’s put together their own video to wish her a happy birthday. Rachel and Sarah that was so sweet and boy you both can sing! What side of the family does that come from? 🙂

As the morning started to unfold, Stacey was managing the website with hourly giveaways. It was so much fun to read all the nice comments and also see all the great wares that were being given away. Thank you to all the crafters that were gracious enough to join Getty’s Virtual party and help make this party out of sight!

There are days when I curse technology. Something freezes, documents are lost, or the occasion battery death, but Friday was certainly an example of what amazing things technology can do. As the day progressed giveaways were in full force, bloggers like Smonk You, The 818, love Maegan, Katie Jean, and The Next Martha were twittering about our giveaways. Thank you all for supporting Getty and our website and really getting into the giveaway spirit.

As the morning progressed I was curious to see how many people have gone on the GettyOwl website and click on topics about SMA. I mean were people just going for the free stuff? And the answer is NO! There were tons of hits on What is SMA, About Getty and my heart grew warm. More people know about SMA and that means it can’t continue to hide and devastate families in secret. There are now more warriors to help us fight.

More videos, more videos, more videos! And more videos, and more videos, and more videos! Did I mention this video? How about this video? Or this video?

Getty’s friend, Miss Angie came over had some fun gifts for her. Stacey also came over with Mr. Leyton and she literally bought every balloon in the greater Sacramento area. Getty’s eyes got huge as Stacey came around the couch with the bouquet. She loves balloons!!!!

Afternoon came and my parents came over and so did Morgan. We asked her to join us and capture such a beautiful day. So here are some pictures to begin with. Morgan is so talented and she gets to work with our little peanut!

Later in the night Getty received a special phone call from her Grammy Evelyn and Grandpa Evin. They sang Happy Birthday to her, it was so sweet. Thank you both for lending your voices to wishing her a special birthday. We certainly miss you guys and wish you could have been here.

So on to the cake. Let me tell you about this cake. It was awesome and ……well let me just show you and you can decide for yourself.

Here is another view.

Simply amazing right??? Beth, from Beth’s Cakes is so incredibly talented and this cake is just WOW!!!!! I didn’t want to cut into because it was too cute. I didn’t want it looking at me as I split its head. 🙂 So I started from the back and worked my way forward. As it stands the face is still in the fridge, I can’t bring myself to eating its face. 🙂

We sang Happy Birthday to Miss Getty and she was all smiles. It was so fun to watch her sit in delight as we all sang to her. Daddy helped her blow out her candle.

Then we were off to taste some frosting. Getty only eats through her g-tube so we knew that tasting some yummy frosting would be great treat.

She swirled it around in her mouth for a bit. Getty seemed to be enjoying it. Then after about a couple of minutes of swirling, she spit it out!!!!! Not that she didn’t like it, but she is trained to spit out all of her “gunkies”. We were proud of her for being so incredibly smart about knowing that something going in should go out just as quick. 🙂

As the night went on Getty continued to spit out the frosting. A very thorough little girl. 🙂 We opened lots of presents. We had a good time watching her play with her new toys. She really enjoyed all the tissue. We should have just bought her tissue and ribbon and I think this girl would have been more than satisfied.

The night ended the way it began. Mark and I singing to her and snuggling her into her little bed. It was an incredible day. Our baby is 1, a huge milestone for us as a family. Now on to many more. Next year we will need to outdo this one and it sure will be tough.

Thank you all who participated in Getty’s Virtual Birthday Party. Thank you to Getty’s Grandpas and Grandmas for being so supportive. Thank you Stacey for helping us celebrate both personally and virtually, and thank you Morgan for taking such beautiful pictures. Friday was a very memorable day and we get to keep them forever.

Drumroll Please!!!

I used a service called Random Number Generator to fairly select the winner for each prize.  Without further ado, here are the winners!

Giveaway #1, Flip Camcorder = Writtendad!!!

Giveaway #2, Jenny Trinh Necklace = Kerri Thruelsen!!!

Giveaway #3, Marty May Print = Nicole Bentley!!!

Giveaway #4, Why Girl Go Astray Paperweight = Lorena Stewart!!!

Giveaway #5, Scarf It Up Pandora’s Box = Deanna Palacios!!!

Giveaway #6, Massage from Kerri T. = Presleys Mommy!!!

Giveaway #7, No More Nasties Cover = Krystal!!!

Giveaway #8, Couture To Cure SMA Clips = Auntie Jama!!!

Giveaway #9, Lauren Smash Robot = Teri Taylor!!!

Giveaway #10, Revitalized Vintage Necklace = Misty Barks!!!

Giveaway #11, Say What Creations Certificate = Debie Trotti!!!

Giveaway #12, $100 iTunes Gift Card = Tina Maye!!!

Giveaway #13, Bottle of Clouds Purse/Keychain/Headband = Morgan!!!

Giveaway #14, Katie Jean Quilt = Allison Wehrkamp!!!

Giveaway #15, Shannon Sweeley Necklace = Mitzi!!!

If you have won a prize, please email staceyball@gmail.com and put the Giveaway that you won in the subject of the email!!

Thank you so much to EVERYONE that came and played yesterday.  It was an amazing day, it was an amazing virtual party and I hope everyone had a good time.  Please remember to check out the stores of those that donated and shop to your hearts content!!