Getty’s Big Sissy!

From Kate:

I hope everyone enjoys a very relaxing Labor Day Weekend. Drive safe, stay safe, and enjoy a little BBQ.

There is a very special lady that will be running for Getty and all children with SMA  in Anaheim, California. She will be running in the Disney Half-Marathon  this Sunday, tomorrow!

Ever since our first photo shoot with Morgan, we knew she was a very special person. She was able to capture our little 3 month old piece of wonderful in such a way that really captured her spirit. Morgan was so gentle with Getty and how could we have known that at that photo shoot that life would take such a drastic change only two weeks after these pictures.

After diagnosis, Morgan honored us with a frantic photo shoot as a family. The diagnosis was so dire that we literally had no idea how much time we had left with Getty. Looking back on this time, it was so sad but at the same time so wrong to put a family through that kind of trauma. Now we know that lots of kids live much longer than the statistics give them, Getty is definitely a testament to that, however at the time we had no idea. Morgan captured that day as well.

That day Morgan became a member of the family. She will go on to capture all of Getty’s milestones of months and celebrations. Her ability to capture a moment in time has really given us some beautiful lasting memories of our family. So that day she became Getty’s Big Sissy!

Getty and Morgan have such a special relationship. Getty always has a sense of calm when Morgan is here. They chat between each other like sibling code and mom and dad don’t understand. 🙂

We asked Morgan to be a Director of Getty Owl Foundation back in February. We knew immediately that her passion for Getty and all kids with SMA was in her soul. We knew that she would be an incredible asset to our team.

Morgan started the Team Getty Runners back in January 2011. The mission is to get as many Team Getty Runners to run the CIM on December 4th, 2011. So far Morgan and the runners have raised over $1,000 on Crowdrise. Her relentless motivation to raise money for SMA research is so inspiring.

Okay before you look at this next one, let me explain. 🙂 As the half marathon was getting closer, Morgan was putting her racing outfit together. The ultimate outfit was to be in full Ariel regalia, but in order to get there, she solicited donations for the foundation. We are so proud to say that she raised enough money to be a complete Ariel at the run. This is just one piece of the ensemble. 🙂 How fun and so committed! 🙂

So as we speak, Morgan is driving to Anaheim from Sacramento to run 13.1 miles to fight SMA. Morgan we are proud of you, we are such fans of you and your passion to help us end SMA, and we send you tons of strength so that your legs will glide across the course.

Miss Getty sends her Big Sissy lots of smoochies!!!!!!!!!

Grand Total!

From Kate:

Well the final art pieces were sold today. A little bittersweet. I know they are all going to good homes, but it was sure nice to have them in our house. They each are so special in their own way.

I want to thank all of the families for participating. Your support made this art auction what it was, a HUGE success. Getty, Miss Angie and I were doing a little bit of art just yesterday and it made me think about all of the special moments you are all having with your kids as well when they make art. Getty gets very talkative when she makes art, it is so fun to hear her squeal and coo as she swipes the canvas. Here are a couple.

Richie had to snuggle Getty as she drew. So cute.

A finger paint masterpiece!

A little green here, a little red there. 🙂

We had a good time yesterday. Anytime Getty can create, she just lightens up.

I want to thank everyone who bought an art piece either at our SMA Art Auction on August 13th or our online SMA Art Auction. You are all helping us raise the money needed to help fund the Gene Therapy Program. Oh and before I forget, please send me a picture if you like of where you decided to hang that special piece. 🙂 hoot@gettyowl.org

Our Grand Total is……..$2,214.50

Not too shabby, incredible in fact! We are so happy indeed!

Wednseday SMA Art Blowout!

From Kate:

I was just going about my merry way this morning when I realized that today is technically the last day of August. This month has just flown by. I had originally thought that I had until Friday to sell the art but no!

As August draws to a close I have been reflecting on SMA Awareness Month and I can’t help but smile. I know that SMA isn’t necessarily a household word but I can’t help but hope that it will someday. I feel like as community our SMA families do the best they can to get the word out and then really it is up to the individual to take that knowledge and do something with it. Perhaps a discussion about SMA carrier testing with a genetic counselor will take place now. Perhaps a couple thinking about starting a family will have a conversation about checking to see if they are carriers. Or maybe a couple that already have children, but are motivated to know for sure if they are passing along this recessive gene. I know a couple of grandmothers are getting tested in the very near future, and their reason? I mean they are done having kids, why would they care? The answer is simple: So they can give that bit of information to their children’s children. I say bravo.

So now what? Well for many of us, SMA is a reality and it is a daily struggle to fight a monster that is unrelenting. I would argue that SMA is everyday for us. And perhaps this month has given others a glimpse into what SMA looks like and how we all so desperately want and need a cure for all of our angels and warriors. They deserve nothing but the best. I hope that with this month there has also been a feeling of hopefulness and understanding about how much we love our children and how we really aren’t that much different from anyone else. Our daily routine might look different and how we get to point A to point B might seem different, but at the very core, we will do anything for our kids, we want what is best for our kids, and we want them to thrive just like your kids.

Getty astonishes me every single day. Her will is simply made for the record books. She greets us everyday with a smile and I know that she is ready to learn something new and experience life.

So SMA Awareness Month isn’t just about carrier testing and basic knowledge but it is also a call to participate. Getty and all of her friends deserve to live long and wonderful lives. I know that there are scientists right now trying to find ways to find that missing link. My hope is that with enough resources these scientists can feel the freedom to explore and find a lasting solution for SMA. So when I say all the money raised from the SMA Art Auction is 100% going to research via Getty Owl Foundation, well that is because it is. Every single dime. Gene Therapy is just one avenue of treatment in the whole fight to end SMA. We believe in the program and we believe good will come of it. So for those that have purchased art, I thank you so much for helping and supporting. I want to thank all of the families that have participated in the SMA Art Auction. It was such a labor of love to show the pieces and frame them.

For those that would still like to buy art, well you are in luck, because I have some for you to buy. 🙂 I call today Wednesday Blowout! All of these pieces are just as amazing as the previous ones. I hope you take a look at each piece and bid.

Quick Update: Yesterday daddy came home with Richie Tenenbaum. Getty was so happy. Here is a picture from last night before we went to bed. Cooper likes him too. 🙂

WEDNESDAY BLOWOUT!!!!!!!

Our first piece this morning comes from a beautiful little lady named Gwendolyn. This framed 17x21x1 fingerpainting is beautifully decorated in pastels. Perfect piece to add some calm in any room. We named it Springtime. Thanks G!

Our second piece named Alphabet Soup was created with love and care by a little boy named Alonzo. This framed 17x13x1 piece is decorated with vibrant colors. A great addition to a child’s room or office.

Our third piece comes from Brenda, mother of Angel Bella and Bradley. We called this piece Frogs for a reason. It is a unframed beautiful 8x10x1 canvas that would be a perfect addition to a child’s room and/or frog enthusiast.

Our fourth piece of the day comes from a sweet little boy named Ford. He created this masterpiece. This framed 17x13x1 creation has such a simple elegance to it. We named it Celebration.

Our fifth piece was created by the loving hands of Miss Micah. This beautiful tree is sure to warm any room in your home. This framed 17x21x1 is simply breathtaking and cozy at the same time. It is named, Tree of Love.

Last, but certainly not least, comes again from the dynamic duo of Brielle and Brooke. This creation we named Miss Butterfly is just too cute. This unframed 20x16x1 canvas has a beautiful illustration of a vibrant butterfly in flight.

Auction Action!

From Kate:

Okay we are back at em’ today with two new pieces. We only have 3 days left of the auction. I hope you have had a great looking at items and bidding on items. A couple of “housekeeping items” if you bought some art we would love to see where it ended up in your loving home. Take a picture of it and email us at hoot@gettyowl.org. Lastly, the Tell 5! giveaway deadline should be August 31st, but I am going to EXTEND it to September 5th. You have until the 5th to send me your pictures of you giving out your Tell 5! bracelets and postcards to be entered into a drawing for a $50 Visa giftcard and a Sweet Water Child, Lullabies for Getty CD. It is that easy. The pictures I have received so far are just awesome! Keep them coming.

Our auction count so far looks like this:

Abstract Minnie: $102.00

Blizzard: $50.00

Desert Flowers: $51.00

Gallant Strength: $50.00

Nest of Life: $75.00

Butterflies in Flight: $76.00

Rainbow Flight: $61.00

HERO: $197.50

Malena’s Garden: $20.50

Hands of the Future: $65.50

Rainbow Worms: $10.50

Twin Love: $20.50

Star Angel: $20.00

Snowmen: $17.50

Peaceful: $10.00

So let’s do this Tuesday style and blow the bidding out of the water. 🙂 Here is the next item up for bids.

This very special piece comes from almost 2 year old, Nate. This modern piece would be a great addition to anyone’s room. Thank you so much Nate for your hard work and your creative style. He and his mom named it Untouchable.

The second piece of the day comes from Mr. Roman who made this spectacular 13x17x1 framed piece that we called Under the Sea. It is vibrant and colorful that would be a perfect addition to any child’s room or room that needs a bit of color punch. 🙂 Thank you Roman for your awesome piece.

Okay folks let the bidding begin. Again these pieces will be up for 24 hours starting from now. All the money raised goes straight to the Gene Therapy Program. Thank you all for your support!

SPCA Intermission

From Kate:

We are taking a one day SMA Art Auction break until tomorrow to a) rest and b) update on Getty’s BIG day at the SPCA today.

Getty got the VIP treatment today at the SPCA. Anna thank you so much for being so generous with your time and your access to show Getty all kinds of animals. Getty got to meet some rabbits, some very snuggly kitties, and few puppies personally. Getty pet them each and they in turn gave her some sniffs and some licks on the hand.

Getty was in good spirits for most of the visit. She loves to be pushed in her stroller to the point that if you stop it….well she doesn’t like it. 🙂 So to remedy that we were literally able to walk through all the kennels with all of the animals being put up for adoption.

She seemed to enjoy the kittens perhaps more than the others. There was one kitten named Richie Tenenbaum that she really took a liking to. I am currently working on Mark now to see if Richie can come home to be with Getty permanently. Fingers crossed. He was such a gentle boy that just seemed to be okay with where he was at and in the company of Getty. They seemed to hit it off from the beginning.

Angie took lots of pictures of Getty’s big day. Here are a few very special ones.

We had just gotten out of the van and strolling onto the SPCA grounds, when mama stopped momentarily. Getty was not happy with me, she wanted us to stop stalling and get moving.  She had animals to see. 🙂

A BIG black bunny was Getty’s first friend. He was so soft and we helped her stroke his velvet ears.

Her next friend was a white and brindle bunny. So soft and she was starting to warm up to her environment and really enjoy what she was experiencing.

And then something very cute started to happen. We could tell that she was starting to anticipate the next animal. It seemed as though she was starting to “get” that once one animal would spend time with her and leave, another one would reappear. So this picture was taken as we were waiting for the next friend to join her. It was so much fun to watch her get ready to say hello. This next friend, Richie Tenenbaum certainly had her attention and heart-strings.

Aren’t they just a pair. At one point Richie laid his head down on Anna’s arm and just looked at Getty. Such a sweet experience.

After Richie left, daddy stepped in to give Getty a few intermission kisses. 🙂

Getty got to meet a puppy friend as well.

And she got to meet some bigger kitties, and they took a liking to her as well.

All in all we had a terrific time. Too be honest getting out and and about is not easy for a couple of reasons. Timing is probably key. Time of day to do things is very structured for us and to be able to find the time that is conducive for others is very difficult, but so appreciated when we can make it work.

Secondly is that going out is really up to Getty. If she isn’t “feeling it” then we don’t do it. We were at the SPCA for a good two hours and she certainly was not telling us she wanted to go. She was having a great time meeting new friends, looking at everything around her and listening to all of the sounds.

We really enjoyed the day and we hope we can go back sometime soon. Thank you to Anna and your staff. We had a great time.

Now someone tell Mark we need to adopt Richie, he isn’t listening to me. 🙂