Getty Owl Foundation

Maiden Voyage

From Kate:

Getty had her monthly appointments today at Kaiser. Starting at 9am, Getty was to get her last Synagis shot followed by the gastro appointment and wrapping everything up with her pulmo doctor. This was our first outing as a family in the van.

BV: Before Van

BV it would take us a good hour to get everything ready to get on the road. A bit of supply packing, Getty would get her breathing exercises, situating the stroller in such a way so it would fit, put Getty in car bed, Pulse ox, etc, etc. The process would take a good 45 minutes. However today was magnificent. There was no playing of Tetrus to make sure all things fit in a little compact car, plus! Our frustration levels were considerably lower than usual, plus! And when all was said and done, Getty was snug as a bug in the back of the van in her car bed with Yo Gabba Gabba playing. Momma was near by but this time comfortably sitting near and not in a human origami position to maintain close observation.

Mark was the captain of the ship. Steering through the crazy down pour of rain,  he confidently and safety veered through traffic. I can’t speak for him, but I can say in my observations of him, that he seemed a lot less stressed than usual. 🙂

The doctor visits were very routine and non-eventful. That is a good thing! Gastro decided that Getty is gaining too much weight too fast. So the decision was to decrease her intake and see where she is in the next month. Our little sprout is “sprouting” too much.:) Gaining too much could potentially strain her airway and we want to make sure we don’t get to that point. Her g-tube is fine and doesn’t need to be changed out. Her thought was that by next November, Getty would need to get the Bard switched out for a bigger one, but we lots of time.

Our only question today for gastro was about diet. Since the 1 year mark is nearing, will her diet change to meet her nutritional needs. We know of a lot of SMA children that are on very specific diets to ensure  proper nutrition, so we will continue researching and figuring out next steps.

Our sweet Getty go the last of her Synagis shots. She is such a trooper. Listen, I am not a needle person, and I am always so in awe of her strength and resilience.  A tear here and there and then was otherwise ready to reunite with her Yo Gabba Gabba. We were hoping to hear that RSV season was nearing an end, however the nurse informed us that the season will most likely be over near the end of May. So we will just continue planning our trips and looking forward to those days and in the meantime lying low, staying healthy.

Last appointment was with pulmo. Getty will have her next sleep study in May. That will tell us if she needs her bi-pap setting altered at all.  About three weeks ago we purchased a new bi-pap mask for Getty. The original one that came with her machine has started to really do a number on her skin. We were finding that some skin was breaking down on her forehead. The new mask is so light and it hardly even touches her forehead so we are very pleased. One other benefit is that it doesn’t leak like the other as well, which is nice because it makes for a very quiet sleep for all of us. 🙂

Other than that he just checked her lungs and scheduled the next appointment. Like I said, uneventful, but for us, uneventful is great.

Appointments were done and we walked back to the van and were on our way home. The weather was remarkably bad today. The rain has been lingering for the past few days and seemed to give it, its best on our way home. I checked on Getty as we were about halfway home and she was sound asleep. I love to watch her sleep, such a peaceful state of being on her face.

We got home and unloaded the van. Got all of Getty’s necessities in order and we were off for a nap. Hearing the rain outside and snuggling with my babe, nothing better.

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