Getty Owl Foundation

Hot Off the Press!

From Kate:

I would like to first thank Honey Agency for their hard work, gracious support, and creative design for our 1st Annual Getty Owl Run/Walk.

We are so excited to announce that our Sponsor Kit is ready for any and all companies interested in participating in our upcoming Getty Owl Run/Walk on February 26, 2012 . We look forward to hearing from companies that are interested in joining with us to help make this a terrific event and believe in our cause.

Thank you all in advance. If you know of a company that might be interested, we would appreciate any and all support.

If you have any questions, please let us know. Contact info is in the sponsor kit.

Hoot! Hoot! Happy Friday!

Flight of the Butterflies

From Kate:

Getty received a very nice gift in the mail from a very nice person a few months ago. It was an Insect Lore cup of caterpillars. Fascinating really, it is clear cup with 5 caterpillars that hang out all together until their elegant transformation into butterflyhood. Every day I would show Getty how they were progressing. They started out really small and then over time boy did those guys get big! They just kept eating and eating and eating. Pretty soon it seemed as though they had no room to move. I had the cup secluded between some of Getty’s stuffed animals friends. The instructions told me to keep them in a cool spot so I thought if they were between her owl friends all would be good.

I kind of forgot about them for a few days and then I noticed that they had all quietly cocooned. Then I freaked, what now? So I elicited the help of some of my SMA mommies to help. “Oh now I need to move them all to the enclosed net, I see.” So Getty and I transitioned them to the net. A bit creepy, I was sure they would hatch in my hand.

Then you are just supposed to wait and let them transition. A week went by and nothing.  We were nearing the second week and I thought for sure they must not be hatching and then what was I supposed to tell Getty. 🙁

The next morning I did the usual routine of peeking in and I just about jumped through the ceiling, one had hatched. I ran to get Getty and I came back and another had hatched. Amazing! Then I brought over the net for Getty to watch the next three hatch. It was awesome. I am still so overwhelmed by how that all happens. To be something, cocoon, and then become something else? Not a bad gig. 🙂

So the big day was here, all the butterflies were happy and healthy and ready for their flight to freedom. Thank you again to our friend from Chicago, that was so kind to help Getty experience this entire process. It was fun for this mom as well. 🙂 Enjoy!

[youtube=http://www.youtube.com/watch?v=xGOdVUIUlpQ]

More Team Getty Runners, Come on Down!

From Kate:

We have three more terrific individuals to introduce everyone to. They have decided to sweat for SMA, train with Getty in their hearts and in their minds, and raise much needed money for research. I give you Kaleasha, Mary, and Bethany. Thank you gals for being a part of the team.

If anyone would like to start donating to any one of these runners Crowdrise page we would certainly appreciate it. Not everyone has signed up yet to fund-raise, but the page is already ready to accept any and all funds. ALL the proceeds from the Team Getty Runners will be going to 200 Commitments for SMA on behalf of Getty Owl Foundation. Our foundation is committed to raising $5,000. Our hope is that with enough donations we can up that commitment to even more.  So if you can help, wonderful or tell a friend, or tell a few friends. 🙂

Kaleasha Johnson

Birthday: May 15th, 1984 (Happy belated birthday!)

Favorite Color: Pink

Hobbies: I am a big sport fan so I love to watch and play sports. I also enjoy board games and traveling.

Interesting Fact About Me: I know how to solve a Rubik’s Cube.

Have you ever ran a marathon?: No way! Just the thought of it makes me tired. Good thing I have baby Getty was my inspiration!

Have you ever heard of SMA before Getty?: No I did not.

Bio: I am currently a senior at William Jessup University working on my Bachelor’s of Science in Counseling Psychology with a minor in Bible and Theology. I am passionate about the fight against human trafficking and I am currently on a weight-a-thon to lose 100 lbs while building awareness and raising funds for that cause. I have a big heart for different cultures and hope to work internationally. I am honored to be a part of Team Getty and I hope to make her proud.

Mary McFarland

Birthday: December 13, 1946

Favorite Colors: Red and Purple

Hobbies: Gardening and Quilting

Interesting Fact About Me: I was born on Friday the 13th.

Have you ever ran a marathon?: No, just a 5K.

Have you ever heard of SMA before Getty?: No

Bio: Born and raising in Los Angeles in a Christian home. I have one sister who is seven years older than me. I had never been out of the state until Jon and I moved to Illinois for his grad school work. Moved back to California for ministry, then to Arkansas for another ministry, then back to CA for Jon to start teaching at San Jose Christian College. we have two children, one son and one daughter. Right now we have three granddaughters and a grandson due in July. Jon and I have been married for 45 years.

(While we wait on a picture of Mary, I will put another famous Marlyn in her place for the time being. 🙂 )

Bethany Dawn Angela Ballard

Birthday: May 1, 1982 (Happy belated Birthday to you too!)

Favorite Colors: There are so many shades of blue, green, red, and purple that are beautiful, I can’t decide. The interior of my house is either going to be decorated really cool or it is going to be a straight disaster. 🙂

Hobbies: Movies, Books, traveling to see great concerts.

Interesting Facts About Me: I was electrocuted once when I was a child. I bit an electirc cord from a radio and I have a permanent  scar (a dip in my lip) to prove it. People who know my personality are probably not surpised by this fact.

Have you ever ran a marathon?: Nope!

Have you ever heard of SMA before Getty?: Nope!

Bio: Let’s see…..I was born in Wyoming, lived in Colorado until college and move out to the Promise Land (aka California). I work at William Jessup University in payroll. I love the people I work with and the mission of the university itself. In 2012, I’ll be going back to school to get my MBA. I can’t wait to do this race for Getty and all the other SMA warriors and angels.

Ladies thank you for joining the crew. I cannot wait to meet you all!

Mixed Emotions

From Kate:

In the days following Getty’s diagnosis, my mind was reeling. I was searching for answers, I was searching for others that were going through my same heartache, and I was not totally content with what I found. I found family after family that looked pretty much like us. Hard working people that were involved in the same train wreck only to pick up the pieces to fight for their child and other SMA children. While that was comforting, it still did not fill a void I was looking for.

I had a moment, no not a moment, I was drenched in this thought for a while. A very big sense of shallowness and thought, where are all the celebrities? Isn’t there someone famous that had gone through this? I am only a high school teacher in a small suburban town in California. How on earth could I make a difference when we are just trying to make ends meet in a society that gravitates towards Hollywood for justice and advocacy? Who would care about a little family in Sacramento that has a terminal child? How would that affect another family, how could they start a movement?

So what do you do? You find out who knows who and try and find connections with people that might have more of a voice to send a message. Then when you get that opportunity, well, what would you want the world to know? Everything I guess, but I think most importantly I would want people to know that this diagnosis could be yours. That is really it. I would love for someone with more connections to announce to the world that Spinal Muscular Atrophy is a reality and with enough resources we can end it. I had this Hollywood idea of a person in front of the camera in a very raw moment wearing a t-shirt with the initials SMA and them telling the viewer that they can make a difference.

I don’t know if I got my wish today or not, but all I know is that Spinal Muscular Atrophy was mentioned today on Oprah. That isn’t a bad start.

Oprah Interviews James Frey

I want to thank James Frey for having the courage to talk about his son’s death. I am not “on the other side,” so I will not even attempt to relate, but I think what I can totally relate to was your vacant stare.

That look I have seen on my husband, on myself, and in other SMA families. That stare tells me that you have seen too much as a father and have endured too much to even comprehend.

I appreciate the fact that you mentioned that you were going to the hospital to have a healthy child. My pregnancy was perfect, dare I say … easy. Measurements were on cue, movement was on cue, and progress was on cue. I, too, was going to have a healthy child. My only worry was that Getty would turn out to be a boy, and we had to frantically think of a backup plan for a name if she was a he. Nowhere in the scenario was the thought that we had passed along this gene, or lack thereof, to her.

I appreciate the fact that you said, Spinal Muscular Atrophy.  Thank you for explaining what SMA is. “A neurological muscular disease, it’s incurable, untreatable, and fatal.”

I thank you for answering questions about your son. You simply didn’t have to. I think some would say you could have done more for SMA, and yes, perhaps that might be the case, but again I am not here to judge, just to thank you.

The words Spinal Muscular Atrophy were uttered for the entire world to hear. Oprah is in her final season and billions are watching. I can only imagine how many times people typed in Spinal Muscular Atrophy into their search engine today.

In an unfortunate way, James Frey, you have shown the world that SMA can happen to anyone: a small town history teacher, to a stay at home mom, to an award winning author.

I have got to believe that awareness is happening, people are talking, and we are moving in the right direction.

This disease has the ability to chop you down to size. It does change your perspective about life and what is worth fighting for.

Getty and I went to her sleep study last night to evaluate her bipap settings. We turned it into a “girls night out”. We had a great time and she fell asleep after 11pm.

As she slept I brushed her hair with my fingers and I thought to myself that this wasn’t the life I wanted for Getty. She deserves to be walking and bouncing around with life. She deserves to be talking. She deserves to be eating all kinds of different foods. She deserves to be a healthy 1 year old kiddo. I want the world for her. So while she slept I cried with all the mommy things that suffocate my heart. And then Getty, in her infinite wisdom and zest for life, wakes me up in the morning with her sweet coos. I opened my eyes only to be greeted by the bluest of eyes.

“Well, good morning sweet pea,” I said. Then she followed her cuteness up with her little smirk. 🙂 So now all is well with this mommy. Days of sadness are present, and those days are excruciating, but they do go away and they are replaced with days of euphoria in the presence of Miss Getty.

So what has this interview done for SMA awareness? Not sure. My hope is that it had done something and we are better off for it as an SMA community. My wish would be that, in some way, James Frey continues to be a participant in this fight. But ultimately it is up to him and his family.

What I would love is to have Oprah on her new network do a piece on SMA. Oh, man, could you believe how powerful that would be? If she interviewed any family the viewers would understand how hard we fight to make sure everyday is magical for our kids. They would get a glimpse of how we multitask  to raise money, learn all we can about this disease, advocate for our kids and for each other.

I think they would also get  a chance to understand that even though SMA has been called an orphan disease, there is nothing insignificant about it. It is devastating, families are affected, and there will continue to be more without proper awareness. I think most importantly, they would get a sense of how we need a cure and how it is entirely possible with enough support.

I will just keep wishing over here in my small town and doing what I can to do right for Getty and all SMA kids.

Tickets Winners and the Zoo

From Kate:

Tickets

I wanted to thank all those that left comments about their favorite teams and even better were your experiences all things baseball. Thank you for participating. I used random.org to choose the winner. Kathy you have won 4 tickets to the game. Congrats and I will send them your way asap. 🙂 One other announcement in regards to the River Cats Non-Profit Night on May 24th is that we sold the most tickets (130) which means we will have an information table at the game for the foundation and Mark WILL be throwing out the first pitch! Awesomeness!

Zoo

Mark and I have been waiting to take Getty to the zoo for some time. Well let’s be honest, Mark and I have been looking forward to getting out of the house with Getty for a long time.  RSV season is basically over and I just wanted her to experience more than just the four walls of our house.

I hate that Getty’s ability to handle sickness is weak, it scares me and I know we need to protect her as much as we can, but I am also sad that there are so many months in the year that she can’t get outside and experience outdoor life. But you make do and we found all kinds of fun things to do inside.

The outdoor temperature this past week has been in the upper 70’s. The weather is definitely getting warmer and safer for Getty. We had been talking about the zoo so much and thought today would be the best time to go. It’s the beginning of the week, maybe not so populated, and not too hot.

We started getting things going about 10am. We packed the travel bag with all the essentials, worst case scenario items, and just-in-case things. Getty was up and about by 10:20 and we did her breathing exercises.

I think she thought something was up — she looked curious. I told her we were going to the zoo and that it was likely some of her owl friends were there. Then we hooted a few times to get in the mood. 🙂

We packed up the cough assist, suction, joey pump, pulse ox, and travel battery on her stroller and we were out the door by 11:30am. Everything fit perfectly in the van. Thank you, thank you Kiwanis Club. Every time we are able to go out as a family in the van I internally thank you all for being so generous.

We got to the Sacramento Zoo and found a place to park. We lifted the stroller out of the van and we were off to make some memories.

Just as we were about to push Getty forward up a slight hill near the zoo entrance, the lights on the pulse ox turned off. The battery was dead! Of all the preparations made ahead of time never once did it occur to us that the pulse ox would keel over.We also forgot to bring the plug for the pulse ox.

So now what? There is no way we could continue not knowing what her oxygen levels were. I thought originally I should be freaking out. We depend on that machine to give us a second-by-second oxygen and heart rate reading and now we know nothing. We just kind of sat there for a second and tried to figure out what to do next.

The three of us, Mark, Angie, and I, decided that Mark will go back to the house, get the cord, and we would be good because we could plug the pulse ox into the portable battery on her stroller. Getty’s sats were fine before the mishap, so we felt comfortable knowing that in the small amount of time he would be gone, she should be fine.We also had the suction and cough assist ready to go in case Getty appeared to be in need.

So we took Getty around some of the park outside the zoo and stopped to suction often just to be safe. I also stopped to put my ear to her chest just to see if she has any rattling and all was good. In fact halfway through our walk, our little owl fell right to sleep, and of course she had her comb. This comb is starting to go everywhere with us now.

Getty needed to eat, so we got the Joey pump ready to go and, while she slept, we were able to feed her. At one point I wanted to check to see if she was almost done eating so I bent down to look at the pump interface and I must have somehow pulled out her tube, letting formula pour out everywhere. 🙁

We fixed it and all was good. I started thinking of all the things that are going wrong and wondering whether to close up shop and try again another day. I was highly considering it. 🙂 We were only about 200 yards away from the zoo, yet we just couldn’t get in the darn place.

Mark returned within twenty minutes. I don’t want to know how fast he was driving. We plugged in the pulse ox and we were ready to go. Getty woke up as well and she smiled with delight. Perhaps she knew this had all happened and she thoughtfully took a nap to refuel for the zoo. Smart girl!

We walked into the zoo and it was just awesome. Trees everywhere, exhibits everywhere, sounds of all kinds of animals surrounded us. We were finally in the right place. We looked over the map to find the best route and then we were off.

Getty was having a great time. She was concentrating on everything she saw. We joked that maybe she thought we were on our usual walk to the regular park and if she was going to expect to see her new animal friends every day. Boy, we would be in trouble. 🙂 Getty and Daddy got a few very special moments in as well.

We were having a great time. One of our last destinations was to find Getty’s BFFs. We knew they had owls here, it was just a matter of finding them … and we certainly did.

These two little guys were very fun to watch. The one that has his head turned was so not in the mood to talk to us. But the big eyed owl was very hooty chatty. He was very curious about our obvious interest in him. We all talked to him, and Getty got a chance to discuss all things owly. If you listen really close, Getty hoots a few times.

[youtube=http://www.youtube.com/watch?v=TMG0zkAzYSE]

There was one other owl exhibit. Angie took some incredible pictures of the Burrowing Owl. I only got one of them so I will post the picture of the baby owl later. Aside from Getty, I don’t think I have every seen a cuter being than a baby Burrowing owl.

So the the day was amazing. I found myself so giddy for Getty and for our family to have such a special day out. I was worried about how this would all play out. I just wanted things to go well to the point we felt comfortable and then confident for the next time and the next time. It was fantastic and we are now looking forward to the next adventure. Angie got some great family pictures of us all together and I will update as soon as I get them.

But for now I think this these pictures say it all. Our little owl had a great time and I know she is ready for the next outing.