Getty Owl Foundation

Kiwanis Saves the Day

From Kate:

Since Getty’s diagnosis it has been very clear to us that there are angels that live among us. They are silent angels that see a need and find a way to make things work. All of their efforts are in the background and they don’t ask for much. They simply go about their day and change people’s lives forever with such ease.

I’ll be honest, SMA is expensive. I won’t bore you with the details but it is emotionally and financially straining. I always tell Mark and I think we would be perfect poster children for the poor middle class. Before Getty’s diagnosis, Mark and I were just making ends meet. That is how insane the economy has been. We are both professional adults and we were barely making ends meet. We lived a modest life and I think we made good financial decisions, but sometimes you can only do the best you can. Who knew our house would lose its value, who knew our daughter would be stricken with a terminal illness that would severely hinder a two-income household, who knew a lot of things?

I prided myself with being reliant on my income, never asked for help, never needed a handout. But now I need to learn how to ask and not feel defeated or feel like a failure. Sometimes things simply happen and you can’t control it or dictate it. What a hard lesson.

So fast forward about a month ago. The amazing Team Getty I work with had their weekly meeting. A guest joined them that fateful day. Kiwanis Bill was in attendance and what transpired from the meeting was that “he knew a guy that had a van that they could fix up for us.” Simply music to our ears. At this point, we were transporting Getty and her equipment in Mark’s small compact car and we were quickly running out of space. We had dreams of a larger vehicle, but it just wasn’t in the financial cards for us.

Now fast forward to Tuesday March 8th. My dear friend Eileen from work came over to be by our side as the van was being delivered. Kiwanis Bill and his wife Gail dropped the van off.

So here I am with Bill and we are doing the key hand-off. This is Getty’s limo. I wanted to incorporate some kind of owl theme to the name of the van and all I could think of was the “Owl Pellet.” I think it is cute because the mini van is round like an owl pellet, but I am sure most might be thinking of the science experiment of extracting bones from a big hair ball, so I will leave it as Getty’s Limo. 🙂

This minivan will give us a chance to transport Getty in comfort. We will have ample space to carry all of her necessities. Getting Getty in and out of the van will be so much easier and safer for all of us. This van will allow us to travel with Getty. Once RSV season is over we plan to get her out and about to see the world. Our current list of places to see keeps growing.  I will say that the zoo is #1. We can’t wait to show her all of the live animals we have been reading about in her books. I can’t wait to see the look on her face when she sees these animals close up.

The possibilities are endless, but none of this would have been possible without the kindness of the Kiwanis Club of Citrus Heights. Thank you Ernie for donating your van and taking such great care of it. Thank you Richard, owner of Walt’s Auto Repair for your labor and expertise to get Getty’s Limo ready to go.  You guys have such warm hearts and we cannot thank you enough for doing this for our family. You are giving us the gift of safe travel, which is so precious to us.

Knowing that Getty is safe and comfortable is our #1 priority. Mark and I can meet those needs at home, but until now and with your help, we were not able to do that with transportation.

GETTY OWL FOUNDATION

Our family is so proud to formally announce the start of the GETTY OWL FOUNDATION, a new nonprofit whose mission is helping families and fighting SMA. We are so excited to launch the foundation!

When we first got Getty’s SMA diagnosis in July 2010, at age 4 months, we were devastated. However, the horrible news did not stop us from immediately launching into a crash course in SMA. We reached out to the SMA community for help, and we were embraced with open arms and big hearts.

We emailed, talked to, and met so many wonderful SMA parents who were amazingly generous. They shared their knowledge and insights and offered a helping hand. They patiently helped calm our fears, brought us into their lives and homes, helped us find resources, taught us to be advocates, shared their medical supplies and equipment, counseled us in times of need, and shared their visions of finding a cure for Spinal Muscular Atrophy.

We have also received such wonderful support from friends, family, and complete strangers from around the world. We started a Getty Owl fund to help pay for things not covered by Getty’s health insurance and to help stabilize our lives as our world seemed to be falling apart around us.  We received generous contributions from our friends and family here in California and from as far away as New York, Europe, and New Zealand. Our family and friends ran a rummage sale, deliver dinner to us during the week, hosted a golf tournament, help us figure out financial strategies, inspired and motivated us to just keep moving, sent us cards, visited us, donated money from a recycling program, provided us respite, gave us a van (more on that later), and so many other great things. We even met some new and amazing friends such as Alex Dezen of The Damwells and his wife, Angela Dezen, who have graciously decided to name a Damnwells album Lullabies for Getty and donate the proceeds to the foundation (more on that later).

Today, Getty has SMA, but she is a healthy and spunky 11 month old Little Owl – smiling, laughing, and hooting all day long. She has all her “basic” medical equipment needed to keep her lungs and tummy as healthy as possible. We are so thankful to all who have helped get her to this point. We could not have done this alone.

Toward the end of 2010, there was no doubt in our minds that we could and should give back to a world that has given us so much. Starting GETTY OWL FOUNDATION just came so naturally as we do our part to help others the same way so many have helped us and as we strive to one day live in a world free from SMA.

SMA is the #1 genetic killer of children under two, but it has also been selected by the National Institutes of Health (NIH) as the disease closest to treatment of more than 600 neurological disorders. There are very promising research programs that could really use some funding to accelerate the fight for a cure. Meanwhile, there are and will continue to be newly diagnosed and other SMA families who will need help. GETTY OWL FOUNDATION is now here to join the fight and offer that help.

Kate and I are on the Board of Directors and we would like to take a moment to acknowledge and thank the other directors of GETTY OWL FOUNDATION (alphabetically, of course :)):

• Stacey Ball: Our dear friend, Stacey, helped set up this blog, which enabled us to reach the world and allowed the world to touch the life of our little Ms. Getty. She volunteered to organize the first annual GETty Crafty Craft Fair within 3 months of the diagnosis, which helped raise SMA awareness and  money for the Getty Owl fund.
• Morgan Saunders: Just before the diagnosis, Morgan met Getty and took Getty’s first professional photos. Since the diagnosis, Morgan has taken more photos of Getty, one of which won Getty the title of Sacramento’s Baby Idol! She spreads SMA awareness wherever she goes and also launched the Team Getty Runners, a group of runners dedicated to raising SMA awareness and raising foundation funds that will go to SMA research.
• Takoa Stathem: From Day 1, Takoa has been a true SMA warrior. She helped get exposure on the local news for the GETty Crafty Craft Fair and helped tremendously with the first annual Getty Owl Benefit Golf Tournament hosted by L Wine Lounge and Golf & Lifestyle Magazine.

We would like to take a moment to thank The Honey Agency for contributing their design and marketing talents to the foundation. They are tremendously friendly, talented, and resourceful.

We are excited about some upcoming events, including the following:

• New website
• Getty Owl Benefit Rummage Sale (Apr 2; San Juan High School, Citrus Heights)
• Getty Spaghetti Feed Benefit – Hosted by Citrus Heights Kiwanis Club  (Apr 2; Citrus Heights)
• Nonprofit Night at the Sacramento River Cats (May 24)
• 2nd Annual GETty Crafty Craft Fair (June 11; Fremont Park, Sacramento)
• SMA Awareness Night Walk & SMA Art Auction (Aug 13; California State Capitol & 2nd Saturday, Sacramento)
• 2nd Annual Getty Owl Benefit Golf Tournament – Hosted by L Wine Lounge and Golf & Lifestyle Magazine  (Sep 19; Granite Bay Golf Club)
• Team Getty Runners at the California International Marathon (Dec 4)
• 1st Annual Getty Owl Run – Quarter Mile Kids’ Race/5k/10k & Post-race family festival (Feb 26, 2012; Crocker Park, Sacramento)

We also look forward to collaborating with other SMA warriors, nonprofits, and organizations. There is so much to be done, and our children are counting on us. We hope you continue with us on this journey and support the cause. Together, we will wipe out SMA!

Feel free to contact us:

GETTY OWL FOUNDATION

5714 Folsom Boulevard, Suite 193

Sacramento, CA 95819

(916) 476-3977

Tax ID: 27-4762075

Team Getty Runners: Corrisa

From Kate:

Good Wednesday to all! Last week I simply didn’t have it in me to post. I was exhausted and to be honest, I just wanted to snuggle with Miss Getty. Please forgive the hiatus, but it was for good reason, she is just so squishy and irresistible, it is seriously hard to do anything in the day.

Before I introduce our next Team Getty Runner, I want to remind everyone about the awesome blog our Miss Morgan has faithfully updated. Team Getty Runners Blog chronicles updates on races, has lots of pictures of our fearless members, and just gives us all a chance to know what is going on in the running world. Some of our Getty Runners have been really busy pounding the pavement. Thank you all for taking this challenge.

Tonight we introduce you all to another awesome Team Getty Runner, Corrisa.

Name: Corrisa Jacomini
Age: 22
Birthday: May 4, 1988
Favorite Colors: bright colors
Hobbies: running, hiking, pretty much most things outdoors
Have you ever ran a marathon? No
Had you ever heard of SMA? No

Bio:
I grew up in Hughson, California for the first 5 years of my life. My family moved to Lathrop, California and we have been there ever since. I have an older brother and sister and two nephews. I am a family oriented gal. I love animals! I enjoy competing in athletic events. I have played 6 different sports since I was 6 years old.

The outdoors are something I have enjoyed since I was a young girl. In 2004 I came to know Christ and had never made a better decision in my life! God has turned my life around and has literally put my feet on solid ground. I LOVE food! Eating is one of my specialties.

I’m very, very excited to support Getty and her family in this cause and I’m looking forward to what God has in store for this family :):)

Corrisa we welcome you with open arms and we are so happy you are a part of the team. All the best in the months ahead.

Remarkable Parents and Advocates Who Never Give Up

Remarkable Parents and Advocates Who Never Give Up
By Mary E. Ulrich

“You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.”

This is an excerpt from Mary’s blog at Climbing Every Mountain (a base camp for parents and caregivers of people with disabilities).

Thank you, Mary, for your post and for permission to share this excerpt!

-Mark

Celebrating the Things We Take for Granted.

From Kate:

If you think about it, our society embraces the upright. You don’t really think about it, you get up in the morning and from that moment most people spend their day, well, upright: walking, sitting, crawling, jumping, etc.

Before having Getty, I hardly gave thought to the fact that some do not have the ability to “be” upright. I never considered that being held at an angle could severely inhibit one’s ability to breathe and/or swallow.

When Getty was first diagnosed with SMA, the only aspect of SMA she was presenting at the time was hypotonia or muscle weakness. When assisted, she could sit upright with no apparent oxygen desaturation. She had no problems swallowing her own secretions or eating.

As the months passed, and well after Getty’s G-tube and Nissen surgery in November 2010, we noticed being upright was becoming difficult for her.  With some assistance, she could sit upright, but we were noticing that the time while upright was starting to get considerably less before she became obviously uncomfortable.

We had a few scares of severe desaturation in the month of December. Mark and I discussed Getty’s care together, like we always do, and we decided that we would no longer push her to be upright. We felt that when the time was right we would pursue the upright world for her again, but not right now.

Don’t misunderstand, the laying down world is just as exciting. The books are the same, the singing is the same, and the exercises and massages are the same. Getty just has a different perspective as maybe the upright world has. If you think about it, it really isn’t that different.

However, in my heart, I was dying inside. On some days I had no problem while on others, I felt paralyzed.  It didn’t phase me before because Getty was still young enough that I didn’t equate crawling with her milestones yet.

She is almost 11 months old now and other kids her age are starting to walk. So I needed to be able to grieve the fact she would never walk. It is silly, really. I know she won’t be able to walk, yet when I saw kids her age walking, I fell into a self-loathing spiral.

I hate SMA.

Then I experienced a day like today. Let me set the stage. First let me say that Mark will be posting about Getty’s new and unbelievable medical stroller called the Exomotion EASyS. It is simply amazing, so I look forward to that story.

Anyway, so today was the day. My hair-brained idea was to see what would happen if Getty was upright. How would that happen? How would she do? Will Getty enjoy the experience? Are we ready?

After lots of suctioning of saliva with the suction machine, I put Getty into her stroller. It was reclined at 180 degrees flat. The pulse oximeter was secured to her toe to let us know if any oxygen decreased and/or heart rate changed. We attached the bi-pap machine to her little nose in an attempt to keep air flowing into her lungs and to help dry and force out her secretions. We were very diligent and also very methodical about this process.

Once all the numbers were good, we started to incline her upper body by adjusting the stroller. I believe we got about 140 degrees and performed the same ritual of suction and motoring. This process of getting upright took some time and then Getty got to about 100 degrees and we stopped. We stopped and you should have seen her face. She was just beaming with delight. I took this picture after we all celebrated.

So let me explain what is going on the the picture. Getty is wearing her bi-pap mask, her neck monkey is hugging her tight to make sure she is comfortable sitting, and the pink ribbons are part of her arm slings made by Nora’s mommy, so she can have some arm movement while sitting. And that smile and tongue is all GETTY!

Here is a side view of Getty in her awesome stroller looking out the window. The chair beside her is my chair, we spent a good portion of the afternoon reading books, talking about what was going on outside and just chatting like girls do.

I love this picture most because it is so symbolic of Getty’s journey. SMA has come into our home and it has shaken our family foundation. At times it robs us of our dignity and strength; yet moments like this continue to renew our faith, give us hope, and it inspires us to push the boundaries of this disease.

When RSV season is over, hopefully in April, we will be outside that window and experiencing new things with Getty. We simply can’t wait. From Getty’s experience today, she is ready to roll!