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Memorial Day

On this Memorial Day, we pause to remember Kate & Getty’s cousin, Travis Woods, and all of our fallen soldiers. Travis was tragically lost in Afghanistan in 2007, but through his loss, others were saved. He is our family’s hero and is always close to our hearts and our thoughts.

We miss you dearly, Travis, and wish you were with us so you could meet Getty.


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!



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!

Leave a

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.