We have missed Morgan so much this past year. She has been in Australia doing her thing and we are so proud of her efforts in school. When she is able to come home for even the briefest amount of time we try and get in a photo shoot for Getty. Morgan is always so gracious with her time and we were lucky enough to get a shoot in before she went back to her Aussie home.
We gave Morgan the title of Getty’s Big Sissy because she has always been so sweet to Getty and I know that she looks out for her, thinks about her and loves her just as a big sister would. Morgan we love you and we do consider you a part of our family.
So Thursday Morgan visited and took some beautiful pictures of Getty. One in particular that I wanted to recreate from when Getty was only 16 months old. My how time flies and my how big and gorgeous Getty is getting. Such a big girl. We are so proud of her.
Lots of great events are coming up this month and next that I just wanted to mention.
July 27th: Our TEAM GETTY crew will be running either the half or full marathon at the SF Marathon, in San Francisco. It has been a pleasure and honor to have been chosen as an official charity of the race and we are equally so excited to have a team participating in the day. The idea of runners and spectators alike learning about SMA, is a great feeling and I am always overcome with emotion when I stop to think about it.
If you would like to donate to our team, you can go to our Crowdrise page and support our running crew. We thank you in advance. If you are already signed up for the marathon and you see one of our runners in our black tech shirts, throw us a high five. If you see a tired woman hunched over, but still moving, that is me. Simply tell me to, “keep on truckin.” That will for sure keep my spirits up. If you are a spectator give us a yell. This is not an easy race and I know whatever support we hear and get will feel like a million bucks.
August 2nd: It’s our 3rd Annual SMA Awareness Night at the Sacramento River Cats. We are so excited to have their support this year while they host a special night to raise awareness for Spinal Muscular Atrophy. We are currently selling tickets for $17 a piece. Children under 23 months are free. Simply call us at 916-476-3977 or email us at firstname.lastname@example.org. We have the tickets and we will mail them out as they sell. Space is limited. All money raised supports Getty Owl Foundation. Last year we had a great group of 60 come and enjoy a great game and help spread awareness.
August is SMA Awareness Month: The entire month of August is Spinal Muscular Atrophy Month. For us, every day is SMA day, but for those that might not know much or anything about SMA, this gives us a chance to educate and empower those that might not. We have fact cards and bracelets to offer anyone that would like them. Here is the catch, you need to educate as well. We will give you the tools and your part of the bargain is to spread the good word about the #1 genetic killer of young children. Knowledge is power. Here are two easy ways you can become an SMA warrior.
1) Ask for a Tell 6! packet.
2) Print out your own SMA Tool Kit.
So here is to a successful and safe SF Marathon, here is to a fun Sacramento River Cats game, here is to SMA Awareness Month, and here is to a continued and concreted effort to END SMA!
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.
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 email@example.com or call us at 916-476-3977.
If you would like to donate to the TEAM GETTY Runners, click HERE!
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!