Getty Owl Foundation

GOF Featured in Dandelion Magazine

From Kate:

I was so humbled to get a phone interview with Melissa Abramovtiz from Dandelion Magazine back in September. Dandelion Magazine is the sister magazine to Sacramento Parent. Dandelion’s focus is on issues and needs of parents of children with special needs.

Since Getty’s diagnosis, I left many of the healthy parent blogs, websites, and magazines behind. I simply found it too difficult to relate and it was futile for me to try. However, when I first picked up Dandelion’s free publication, I was so happy to read about journeys of families with special needs children and topics I could instantly relate to. Even though they were not SMA families, it was still a comfort to read about similar fights with doctors, the need to learn about the best care possible for their child, and how to incorporate their child in a world that doesn’t necessarily make their environment accessible. Dandelion also has great resources and finds some great activities in the community for all to experience.

When I got the email and then phone interview about Getty Owl Foundation, I could not have been more excited.

Thanks to Melissa Abramovtiz for asking such informed questions about SMA. I could tell she had done her SMA homework. I was very impressed. 🙂

Go here to read the Winter Issue.  The GOF article is on pages 18 & 19.

Thanks to Dandelion and Sacramento Parent for making this article possible, this is an incredible opportunity for us and your readers to learn more about SMA.

Thanks also to the Willams Family for offering their input on the article and Stacey for saying some really nice things. 🙂

Both Sacramento Parent and Dandelion are both free publications in the greater Sacramento area. Pick one up if you can, both are very informative and helpful for parents.

Stranded on a Deserted Island for 4 Days

From Kate:

Our new normal seems to always have a “worst case scenario” attached to it. It is hard to be carefree because life can change in a moment, and it is better to be prepared than surprised. I don’t like surprises with regard to SMA. In our experience so far with this disease, a surprise comes when we didn’t do enough reading and research or we didn’t pack enough stuff and we are left without.

Which leads me to our latest project.

Some might call this an emergency bag, but we call it our “Stranded on a Deserted Island for 4 Days ” bag. The name kind of makes it a little less immediate and perhaps might invoke a sense of tropical breezes instead of hospital stay and smell.

This bag has everything Getty needs for at least 4 days. This is a bag we can pick up at a moments notice. We can feel prepared and secure that she will have everything she needs if we are to jump into an ambulance or our van to the hospital.

Of course this is not the bag any family thinks they would have to pack, but I cannot tell you how vital it was for us when Getty was hospitalized back in June. We were so prepared with supplies and food, etc. We were actually really overwhelmed by how many supplies and dietary items the PICU did not have for her.

Mark and I kept saying, “What if we didn’t have this stuff? What would we have done to help Getty?” It was a real wake up call for us for sure.

Since Getty’s PICU stay in June, Mark and I have stepped it up a notch and planned for a worst case scenario for 4 days; hence ,the “stranded on an island” theme. 🙂

Here is the bag. Since Getty is a little girl, it had to be pink and with a little bit of flare: the polka dots. The list of contents is always evolving, adding and subtracting, but here is the Deserted Island Supply List if you would like to see.

Then we have the “Stranded on an Desert Island for 2 Days” bag. This bag is what we take to every doctor appointment. It has two days worth of everything Getty will need. It is the same contents of the bigger bag, just smaller quantities.

As I was thinking about doing this post, I kept saying to myself, “Would anyone care about this topic”? Maybe, maybe not.

Let me tell you what my intentions were about writing about this subject. I have two. One, I wanted people to get an glimpse of what commitment looks like in the SMA world. SMA families are hard core, committed, and plan for just about every scenario there is.

We don’t want to be pitied; we just want people to understand that what would be a mere cold to a healthy child is trench warfare to a child with a weak immune system. If we have to lug a huge piece of luggage around, that seems like small beans to making sure our kids are well taken care of.

As a mother, this is what I have control over. I don’t have control over this disease, but I can plan for everything Getty might need, and that gives me a sense of peace. I remember when Getty was admitted in June to the PICU and the Intensivist sarcastically remarked, “Are you all moving in?” And we respectfully responded, “Yes, yes we are.”

My second point of writing this is to suggest to all families, whomever you are, perhaps we all need a “stranded on a deserted island” bag for our children. I am not trying to sound like an alarmist in the least. I am also not trying to suggest that your list needs to be as crazy comprehensive as ours. But what if families just put a little bag together and stored it away in a closet, so if a situation arises and you need to leave quickly, you will have peace to know that items of comfort, items of care, items of necessity are in a bag for your little one(s).

Enough with the soap box.

I just remember when Getty was first admitted, we busted out the iPad, she had her blanket, and her pillows and she had as much of the comforts of home as possible. As her parents, we had some peace that even though she was in a hospital battling an illness, she had some comforts from home along the way.

Team Getty Conquered CIM!

From Kate:

Wow, what an amazing day yesterday was. Sunday was the 29th CIM. It has always been in Sacramento, yet I had never been a spectator at the finish line. Wow, what a beautiful place to be.

I witnessed families cheering on their loved ones. I saw 80+ year old’s crossing the finish line. I saw groups of women in unified colors cross the line in a way in which they celebrated, convinced me that it wasn’t just about finishing this race. The impact of crossing together set the tone for me as a spectator that this was more than just a physical challenge, it was an emotional one as well.

I heard one lady tell her husband after crossing the line, “never let me run three marathons again in three months!” What? People do more than one in a year, I was beside myself. 🙂 I heard another celebration over to my right that touched me more than words. A man was running for a loved one that had died from breast cancer. I didn’t even know them and I was crying and feeling that strength within the entire group.

After they had left, I stood there with my partner in crime, Cooper and I thought, “wait a second, am I prepared for this?” Am I prepared to watch one of our Team Getty Runners run across that line?

Earlier I was able to celebrate with one of our relay groups. Takoa, Steph, Shea, and Linda had an awesome race and came in at a very fast time. It was great to talk about the route, give them lots of hugs, thank them for their commitment and willingness to support us and become a Team Getty Runner. Even the youngest member of our Team Getty members was there to cheer everyone on as well.

Way to go ladies!!!!

Miss Mady I cannot wait to see you run like a gazette at the Getty Owl Run/Walk!

So to answer the question, no I was not emotionally ready to see Team Getty Runners come in. There were thousands of people coming in from both sides of the street. I was only able to catch two TG runners come in. Two very important people in fact, and I am so glad I was able to find them in the huge sea of human beings.

One was an old colleague of mine. We used to work together at San Juan HS. We had not been able to keep in touch since she had moved, but I knew she was doing well and that she had two beautiful girls. When Liz joined the team, I was so humbled. It was so incredible for her to tell me that Getty was her inspiration to run these 26.2 miles. That is a lot to digest as Getty’s mother. I mean I can tell you how incredible she is, but when someone else tells me that Getty is their inspiration, well it is an amazing feeling. I caught Liz as she crossed the finish line and I just lost it. I called her over, we hugged and I just couldn’t stop crying. Such an emotional thing to hug a person who just ran 26.2 miles for my little girl and to help raise money to help my little girl have even more hope for a long life. Thank you Liz and thank you to your family for making this your weekend event. So, so great to see you.

Thanks Liz!

The mastermind of this entire Team Getty Runner/Walker Crew was the brainchild of our very own Morgan. If you want to talk about commitment, you need to spend a moment with this young lady to understand how much she loves Getty, how focused she is on the success of Team Getty, and who is committed to help end SMA.

This was Morgan’s first marathon and she ran the entire way. What a trooper and from the looks of the pictures she took along the way, it looked like she was having a great time and Getty Owl was with her all the way, even at the finish line.

I Run 4 Owl

7 Mile marker 🙂

And as Morgan approached the finish line wouldn’t you guess that she didn’t sprint through to the end, she slowed down and weaved back and forth as a flying owl and Getty Owl in hand. It was a memory I will have forever.

Morgan and Getty Owl in hand.

As I watched her fly across the finish line, the water works turned on and I couldn’t wait to give her a celebratory hug. What an accomplishment and yet just another challenge you have taken on and accomplished with grace, Miss Morgan. Well done!

What an amazing day. As a spectator it was remarkable to watch all of the runners come in, it is another to be a runner, so it got me thinking. I think I might try it next year. It would be such a wonderful way to honor Getty, like so many had done for her yesterday. Now I need to dust my shoes off or better yet scrub the dust off my shoes. 🙂

So all in all our Team Getty Runners have raised over $4,000 towards our goal of $10,000. We are getting there guys and gals. Let’s keep it up.

I have had so many people ask how they can become a Team Getty Runner/Walker. Easy, just email us at hoot@gettyowl.org

We will get you a shirt and you are an official member. We aren’t an exclusive group, but we do have one goal in mind, to END SMA. So if that is up your ally we would love to have you.

We would just like to thank every single member of the team for running the CIM this year, let’s definitely shoot for next year and races in between and let’s multiply our pack.

Watch Out CIM, Team Getty Is Here!

From Kate:

CIM stands for California International Marathon. As in 26.2 miles of pure sweat and asphalt. On this Sunday, December 4th a group of dedicated Team Getty Runners will be taking on what I would consider one of the most incredible challenges in life, a marathon.

This incredible group has been training for the past year to get ready for this day. They have entered races throughout the year, wearing their Team Getty shirts proudly and doing their best to spread SMA awareness as they run each mile.

Mark, Getty, and I say thank you. We thank you all for making this commitment. We thank you for coming aboard to help us fight SMA. Thank you for taking time from your own busy lives and families to train for this enormous race. Thank you, thank you, thank you.

We thank you all  for helping raise money on Crowdrise. Because of you, we are able to put these funds towards the Gene Therapy Program. We thank all of the donors as well. Thank you for believing in each Team Getty Runner to help sponsor them. Everyone’s support has been so humbling.

We want to thank Morgan for getting this team together back in January. You have been such a huge supporter and best big sissy to Miss Getty. Thank you for organizing this very special group who will be running proudly for Getty and for Getty Owl Foundation on Sunday.

For those that will be participating or observing the race, look out for our sea of blue Team Getty shirts. Give them a hoot! Odds are they will hoot back and tell you a little about why you should know more about the #1 genetic killer of young children.

So to our amazing Team Getty members, we say thank you. Get lots of rest, lots of water and carbs. And remember that we support you and hope that our good vibes will help you run swifter and lighter. And remember, “We kick ours to kick SMA’s”

Counting Our Many Blessings

From Kate:

What better day than today to rejoice about Thanksgiving yesterday as well as to celebrate Getty’s 20 month birthday. As all kids do, they age and get older. You think about all the clothes they have grown out of, the toys they played with, and you say to yourself, “where did the time go?” I find myself doing that a lot lately. How on earth is Getty already 20 months old?

I think sometimes even in our situation we can also take life for granted. We work so hard to keep Getty healthy that I think sometimes we forget that she is growing into a little lady before our eyes. Last night I had to catch my breath when I looked into her eyes. I was just so overwhelmed by how Getty is maturing and I was just in awe of her beauty and her grace.

Last night we celebrated with my parents, Mark, Getty, and our houseful of animal friends. We opted for an Italian Thanksgiving this year, which means raviolis and all the fixings. It was a very nice and relaxing night. I thank my mom for taking on ALL of the cooking. Mark nor I had the energy to do really anything culinary. So raviolis, salad, antipasti, bread, etc. It tasted amazing!

We were all eating at the table, except for the animals, well no I take that back, Cooper was also with us under the table waiting patiently for something, anything to drop on the floor.

Getty was wearing her new dress and her new haircut. She looked so very cute. We put Getty in the stroller and she was positioned between Mark and I. Everyone dug in. Getty and I kind of shared dinner as we went. I would eat a piece of food and give her a little of it to feel and to smell and then if she was up for it, I would put the item next to her mouth to feel with her lips and tongue. Without fail every piece of food I would give her, she would immediately wince. Her whole face would pucker up as if to say, “what the HELL is this?” And then within a second or so, her eyes would get big and she would show so much joy in the new texture she was touching.

So let’s see, food she did like to hold was the slimy ravioli. She was not quite sure what to make of the chickpea and the kidney bean. She enjoyed crunching on a piece of celery. Her four front teeth made some tremendous bite marks in several vegetables. I was hesitant to give her a piece of raw broccoli. For some reason I thought she would reject it immediately, boy was I wrong.

I put it in her hands and moved her hand towards her mouth. Again, she winced, but when she felt it with her mouth, she was in heaven. She loved the texture and would move the broccoli all around her mouth. It was so much fun to be interacting with her in this way. All four of us were having a great time watching her explore her world. Then came the olives.

She had so much fun moving her fingers back and forth and watching the olives move about. After a few minutes I would swoop in and eat each olive one by one. You could just see her brain working and literally subtracting as I ate another. Just as fast as I ate them, I replaced them with new shiny olives on her little fingers. I believe most of my dinner consisted of olives, raviolis, vegetables, and not much else. My plate was from Getty’s hand or fingers.

Getty had so much fun “playing” with her food. We all had a great time interacting with her the entire time. She was so chatty the entire time and I don’t know how else to explain it, only to say, it will always be a great memory for our family.

After dinner we all just kind of hug out and enjoyed each others company. We couldn’t help but reflect on the year prior. We had just made it home in time to celebrate Thanksgiving after Getty was in the hospital for her g-tube placement. Lots of new changes that now just feel routine. Lots of unknowns that are so clear now. What a difference a year makes.

Every day we count our blessings. Life is so incredibly precious and having Getty with us for another Thanksgiving just makes life that much better, we hope and know that there are more to come.

I have always been enamored with Elanor Roosevelt. I came across this quote and thought it was very  appropriate.

“The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences.”

Thank you Getty for continuing to teach us your wisdom.