Getty Owl Foundation

Zoo School

From Kate:

Wednesday was a beautiful day. Getty got to take part in her first of two zoo school fun days. I had not bought the official Sacramento Zoo School t-shirt yet, so I thought a bug t-shirt would suffice. Before leaving I asked Getty what bug she wanted to carry with her as we got into the van. Praying Mantis was the choice and we were off. We found perfect parking and we unloaded the car and found the meet up spot.

In past years I have wanted to enroll Getty in summer programs but there were always trouble with carrying it out. I simply was a loser mom and I missed deadlines. I was always so nervous about having her around kids, and perhaps the overall feeling of uneasiness of leaving the house. One can get very accustomed to not leaving the house. I can control (for the most part) what happens at home. I don’t have to worry as a mother about the elements, I don’t have to worry about germ kids touching Getty, and I certainly do not have to listen to the usual comments of (Why is she laying down? She is sick isn’t she. Stop starring honey!) I can handle comments fine, but there is a limit. Think about that for a moment. What if everywhere you took your precious child you heard comments like that. Even the subtle gaze of “something is wrong”. It wears on a mom, this mom. I want to be able to take Getty anywhere and she just be one of the kids.

I want to thank the Sacramento Zoo for just being totally awesome! Completely accommodating. The kids were awesome. The parents were awesome. Getty’s experience went off without a hitch and I attribute that to human beings that just get it. Getty was just one of the kids. I got to just be a mom.

The day started in the Discovery Room where everyone got their name button. Circle time started the day. Each child got to tell the class what their favorite animal was. I asked Getty previously what her favorite animal was at home. I showed her numerous pictures of animals and then we narrowed it down. Something told me that animals were going to be involved in this camp and I thought perhaps we needed the basics like favorite animal. 🙂 Giraffe was hands down the winner. So I verbalized the animal name for Getty to the class. There were some flamingos, bears, a hawk, lots of snakes and oddly enough a lot of giraffes. 🙂 For some of the kids that chose giraffe, it was very cute, they looked at Getty first and then said, “giraffe.” Not sure what that meant, but I took at it as a way for that child to relate to Getty. I could be totally wrong, but still it felt amazing. I can only imagine what that may have felt for Getty to know that there were more kids in the room that also liked giraffes.

We left the room after sorting animals by “fur, feathers, and scales”. We moved on to the amphitheater, where all the kids got to touch all kinds of fun creatures. Getty felt a snake (brave little lady), a hedgehog, a lizard, and a duck (now I want Getty to have a duck).

Back to the classroom for some crafts and a story.

The weather could not have been better. The Sacramento weather restrained itself to the low 80’s. That alone was a huge concern for me before the day came. Sacramento is notorious for HOT weather, even in the mornings. But it was perfect!

Wednesday was perfect. I enjoyed spending some great moments with Getty. I know inside Getty’s brain was blown by all of the animals and the excitement of the day with all of the kids.

After Zoo School we headed over to Petco. We were on a mission. Since Getty got to see so many cool creatures, I thought perhaps we could find some low maintenance creatures for her own. So an aquarium was purchased and now we have Jacque, Gil and Marlin. Our family now has three fish. Getty picked out the rocks. The backdrop is of Finding Nemo, so it was only fair to give Getty the options of names from the movie. Daddy and Getty chose names that night. Pictures to come. 🙂

Life is all about moments. Wednesday was a beautiful moment and day all the way around. Heck, we were even on time, early even. 🙂 Sitting with Getty and holding her hand in the amphitheater while she gazed and touched all of the animals was heavenly. So glad we had the resources to make this day happen. I am so glad she was able to try something new and love the day.

Band of Warriors

From Kate:

We are getting closer to the July 27th, SF Marathon and I wanted to give an update about our band of warriors. I hope to have a blog post out before the run, so everyone can meet the family and we can all explain why we signed up.

Training has been far more difficult than last year. Finding niches of time to get some mileage has proven few and far between. I keep telling myself sarcastically, “well this is going to be fun”. Meaning, not sure if my body is ready, but it will happen. Writing this post might be my conscious way of telling my entire body all the up to my hair down to my toes nails that I will finish. 🙂

I want to thank all of our awesome TEAM GETTY runners. I was humbled when Getty Owl Foundation was chosen as a charity partner of the SF Marathon and then I was over the moon when I realized that we will also have a great group of people spreading the good word out on the course about SMA. When good things come, they usually come in bulk, and that makes this mom’s heart sing.

The SF Marathon is a very popular run that typically sells out. In true form the Marathon and 1st Half Marathon has sold out at this point. We have over 20 TEAM GETTY runners so far and we are still looking for more to add to our our ever growing team. We still have slots for the 2nd half marathon. If you are interested please email us at hoot@gettyowl.org or call us at 916-476-3977.

If you would like to donate to the TEAM GETTY Runners, click HERE!

One Step Closer to Cure Spinal Muscular Atrophy (SMA)

From Mark:

Gene Therapy human clinical trials are OPEN and recruiting participants!

Gene Therapy is a research program at Nationwide Children’s Hospital, conducted by Dr. Brian Kaspar. The basic goal is to use a special virus to replace the ONE missing gene causing Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. Once in place, by a single injection, the new gene is expected to work just like the missing gene should work, completely wiping out SMA at the source.

A lot of questions need to be answered in this process regarding safety and efficacy. The only way to truly answer them is to try gene therapy on humans and take all precautions along the way. Some amazing SMA families will step up into this program and help move the entire SMA population closer to a cure.

 The trial is open to the following children:

• SMA Type 1
• Age nine months or younger at the day of injection
• Bi-allec SMN1 gene mutations with 2 copies of SMN2
• Onset of SMA before age 6 months
• Hypotonia with delay in motor skills, poor head control, round shoulder posture, and hypermobility of joints

For exclusion criteria and more information – CLICK HERE.

Getty Owl Foundation has been a proud supporter and fundraiser for this program since Day One. Thank you for all of your support and contributions over the years. You are part of something great, and we all hope gene therapy is the answer to this cruel disorder.

Our work is not done, however, and we look forward to your continued support! Thank you!

Hoot hoot!

Last Day of School

From Kate:

Getty’s last day of school was on Thursday. Getty got the chance to go to her physical pre-school and see her friends and say, “Happy Summer” to all of her peers.

It was a beautiful day (hot and bright), but beautiful the same in the amount of memories that were created. I am not a mother of a healthy child. I don’t know what it means or feels to a mother who watches her daughter/son walk across the lawn to greet her pre-school teacher and to receive a certificate of completion (diploma). But I can tell you what it meant for me. I am taking the time to say in this manner because my assumption is that a pre-school ceremony is just one stepping stone to kindergarten, then first grade, etc. We were told Getty would not “make it to the age of two”, and that alone makes one realize that this day maybe might not have happened. So stating it in this manner is not to suggest this day was not precious for the other families, it was just different. SMA is cruel in so many ways and even though we give Getty every chance at an amazing life, there is no room for error on our end.

Unfortunately, Mark was not able to come, but I know I can speak for him when I explain this feeling. Before Getty received her certificate, her awesome teacher said sentences like, “we are so glad to have Getty here today.” She could have just stopped there, because that is seriously the only sentence that means the world to us. Getty is here. GETTY IS HERE! We are experiencing events in Getty’s life that we had no idea we would. We have never been doom and gloom and we seriously try very hard to keep the positive in the forefront. But man, did that sentence permeate through my heart.

As a family we also have hard days. Days that can really break a parent’s heart. But with Getty’s unconditional love and support from our family and friends, those moments are fleeting and sometimes are few and far between. So that perhaps simple sentence was both emotional and also a triumphant one.

Watching Getty receive her certificate was affirmation to me as a mother that, “yes, Getty IS doing this and we are loving this journey with her.”

Her teacher spent a few minutes talking to the group of parents about Getty and then she asked the kids how old Getty is and the entire class yelled 4! In my heart and mind, I also said 4 and I had a beautiful flashback of our time so far with Getty. I thought about birthdays, walks to the park, the sound of her giggles, the beautiful moments we have all shared as a family, then I flashed back to where I physically was. I had her hold her certificate and I caressed her hand as the class sang a few songs.

You know I dream of these moments with Getty. I don’t, take these events for granted and I know that our lives are fragile but firm with determination. But I tell you, Getty is a fighter and I know that next year, we will be at the same event and celebrating the completion of another grade level.

It was a very emotional day for me. Seeing all of the kids circle around Getty and welcome her in such a loving way was beautiful. The way in which they take great care to make sure she is involved is such a precious thing to be witness to.

But in true Getty form I could tell she could sense I was getting a bit over emotional and went “Getty” on me. It was clear that at some point in the celebration of certificates, the spotlight was not going to be on her anymore. She had sung the songs, she had received her certificate and so that meant, “let’s go!” Her heart rate increased, she started to whimper and so I looked over at Angie and my mom across the grass and mouthed, “we need to go.”  I swear Getty is a diva. If only I could hear and see the dialogue in her head, it clearly would have sounded like, “um…..ok this isn’t about me anymore, let’s go.”

We abided and we left mid ceremony. Listen, I am not going to battle with her. That wasn’t the moment to talk about “sharing”. 🙂

So here is to summer. Getty’s list of to do’s consist of the following.

Summer School

Zoo School

Walks to the duck pond

Trips to the ocean

Hanging out in jogging stroller as mom pushes the princess.

Experiencing life, love and happiness.

Whatcha Been Up To?

From Kate:

This Spring has brought a very busy little missy. As Getty gets older it seems as though more opportunities come her way. Pre-school, reading, talking, movies, ocean trip, swinging, power chairing, and everything but the kitchen sink.

Here is what we know she loves:

Pre-school: She loves the interaction and direct instruction with her teacher at home. She also loves the interaction she gets with the kids at her virtual school. Her vocabulary is increasing. When Getty speaks, she will use her syllables to make words. She is doing so great at it and it is helping her teachers understand her needs and/or to let them know how smart she is. Her eye gaze is grand. There is always choice in her instruction and Getty is really great at everything she does. She understands patterns, colors, letters, numbers, her environment, bugs, animals, etc. Every book that is read to her, she is locked in like glue. She is a great listener and she is patient when she wants to be. 🙂 Getty loves music and loves to listen to songs.

She goes into her virtual classroom everyday to see the kids and gather some social interaction with her class. The kids are very cute. They announce “Getty’s here!” and they offer copious amounts of hellos and then goodbyes at the end of the day. We stay for about 30 minutes to listen to story time or an activity during circle time. Next year the amount of time and the activities will be longer and more interactive. This year has definitely been a learning year for her teachers and myself. So next year we can all hit the ground running make the virtual aspect of Getty’s learning awesome.

Getty got to take part in her first “picture day”. It was so awesome to dress her up and take school pictures and a class picture. The kids were so excited to see her and the light beamed from her eyes. We think she thought the experience was pretty cool. Pictures just came back and she is just as sweet in print as she is in person. We are so glad that she was able to take part and have that real life school experience and so thankful that she had time to hang out with her classroom friends.

I am so thankful for Getty’s school district to offer direct instruction and virtual for her. It is helping her learn and grow leaps and bounds. I have really enjoyed the relationships that she has created with not only the kids in classroom but her teachers in and out of the house. They have all been so kind and generous with their time and love. Getty loves all of them and I enjoy more than anything to sit back behind them and watch each teacher interact with Getty. They have their special time together and it makes this mom’s heart warm.

The end of the year is coming soon and then she will hit the books again and have four weeks of summer school. I enrolled Getty into Zoo School as well. The Sacramento Zoo has a great pre-school program throughout the weeks of summer and Getty will be a certified Little Duckling. Can that sound any cuter? So excited for her to have new experiences and to meet new people.

Out and About: It has been difficult this spring to get out and explore, so most of our activities have been at home. We were able to get away briefly to Bodega Bay. Again brief, but memorable. We braved the wind and found a quiet spot at the beach. Cooper came along as well. The trip was fun. I hope that we can sneak in a few trips before summer is out.

Traveling is not easy. I guess I will just leave it at that. I will say this, it is not just throwing a couple pieces of luggage into a van and heading out. It is packing a small hospital and then some into a van. 🙂 Not easy but it will never deter us from exploring.

Home Fun: A lot of the fun has been at home. We have tried very hard to make Getty’s environment interactive and fun at home. Since most of our time is under this roof, heck we need to have a blast. Getty has been rockin it in her power chair. She is doing a great job of moving left and right. I have not given her the power to move forward yet. Getty will be fitted for her custom headrest soon and when that happens I will be more than willing to give her the keys to the forward switch. I have been playing games with her to make sure she knows when to stop and when to go. She is getting really good at it, however in pure 4 year old form, she will listen when she wants. When she decides not to listen I take a reward sticker away. She always gives me a grunt and look at me as if to say, “hey give that back!” A conversation ensues about why I took the sticker and how she needs to listen to me. Most of the time she will correct her behavior and sometimes she will literally turn and keep turning and not stop and giggle as she rebels again. I love her spunk!

We play dress up, we sing songs, we read books. We have started to read her higher level books for the sake of broadening her vocabulary and imagination. Last year I tried several times to see what she would do if she had to listen to a book without pictures. Ummm she didn’t like it. So I tried again this year and she loved it. Her attention to the story was amazing to experience.

So far we have read:

Charlotte’s Web

James and the Giant Peach

Matilda

I think I have purchased all of Roald Dahl’s books so far. She loves the silly stories. I incorporated each book with paper puppets of each character. I thought while they speak, Getty might enjoy seeing them talk. Perhaps that would help enhance her experience and interest. So far so good. I have failed to put up the Matilda as she was speaking one day and Getty growled at me like a tiger. So I don’t make that mistake anymore. Hehe!

She loves reading and listening to books. So proud of her.

She plays with bubbles, she paints, she giggles, she bakes and now she swings. A great friend made Getty her own custom swing. She lays flat and swings to her heart’s content. It is very cool and it is just one more aspect of making home a place of absolute delight.

Next up for this spring/summer:

Baseball

Accessible Playground

More bird watching. Another birder in the house, yahoo!

Get going in the jogging stroller

Go to a Sacramento Republic soccer game

World Cup 2014-Watch and cheer on USA and England!!!!!

Books, books, books!

Overall: Getty’s health has remained rockin! She has been on bi–pap a bit more than before. The good thing is that it is out of germ necessity, not diminishing lung capacity. Diet is spot on and going well. Minor tweaks here and there. Her blood work is staying within average ranges. We are simply blessed to have such a happy kiddo who continues to kick SMA in a beeeeehind!

She is a little over 37 pounds and over 43 inches. We call her Getty, Spaghetti, Goosie, Chicken Soup, Babe, Little Lady and now our little Beast. 🙂

We are so proud of our little owl! You keep hooting and hollering and fighting SMA. So far Getty, you are doing a bang up job and showing SMA that you are living and loving life regardless of diagnosis.

I have been reading Getty Shel Silverstein lately and I came across a poem that I know I read as a child, but it serves such an amazing purpose now. I think it helps put so many things in perspective in our new normal.

Listen To The Mustn’ts

Listen to the MUSTN’TS, child

Listen to the DON’TS

Listen to the SHOULDN’TS

The IMPOSSIBLES, the WONT”S

Listen to the NEVER HAVES

Then listen close to me-

Anything can happen, child

ANYTHING can be.

I truly feel like Getty gets that. She knows that life is worth living and it is pretty cool. We love it as well.