We have a lot of events coming up for Getty Owl Foundation. Our agenda might seem aggressive and here is why: as a mother, my goal is to make sure that I leave this world better than I found it. To make a difference, I need people to understand SMA.
You need to know that 1 in 40 people is a carrier, which is over 10 million people in the US and, to this day, I am only aware of one non-SMA parent who knows whether she is a carrier. It is a complete shock to hear the news that you have basically given your child an unknown gene that will slowly rob her of the muscles and ultimately her life. Shock turns into anger because you immediately think, “Why didn’t someone tell me, why isn’t testing for SMA in the prenatal screening.” I went through some definite months of just being pissed. Too me, I thought, “Who isn’t doing their job?”
I had a really interesting conversation with a friend who is also a prenatal nurse, and she was telling me that she had never heard of SMA. Unfortunately, I lump all nurses together and so I was surprised to hear her say that. And then I got to thinking. If children aren’t actually diagnosed until after birth, well then that would make sense. She has done her job of taking care of the pregnant mother and, after the birth, SMA issues would typically be handled by some other medical professional.
I thought, “What kind of impact would it make for prenatal doctors to suggest SMA carrying testing to their patients?” They could at least let parents know of their options. Then the parents can can choose for themselves. I am not one to tell parents what choices to make for their families, but I do believe there should be choices.
I would have appreciated my OB doctor to discuss various tests before pregnancy. I would have liked to have a conversation about prenatal testing. We did opt for the usual prenatal test, but as we have learned now, SMA was not part of the screening. If it were then Mark and I could have had a conversation about what we wanted to do. Education is key. I went to college because I wanted options on what I wanted to do with my life. I think pregnancy is similar.
So having said that, Getty Owl Foundation is focused and passionate about all things SMA. We want people to be aware of Spinal Muscular Atrophy. We want people to know that they CAN be carriers. I want people to know that even though they already have healthy children, they could UNKNOWINGLY transmit the SMA gene to another child. I want people to know that SMA is a horrible disease that takes a toll on everyone involved; but in the same breath, there are proactive ways to care for your child.
Getty is a happy little girl and we are doing the absolute best we can to make sure her life is full of surprises and experiences just like any other family would do for their child.
I want people to know that 1 in 6,000 births is effected by SMA. 60% of SMA diagnosis is to a Type I child, the most severe. Our sweet Getty along with thousands of other warriors and angels are Type I. Too many babies are dealt this fate and we are going to do everything in our power to raise money to help find a cure for SMA. We will push down doors, we will educate, and we will prevail. Every day I look into Getty’s eyes and she motivates me to fight.
If you have some time, please take a look at our Upcoming Events page and perhaps you can take part in some of our events. We really tried to find events that were appealing to all kinds of interests. A baseball game, craft fair, walk, a round of golf, a run, and if you can’t make these events please consider making a tax-deductible donation.
Let’s Do This!
RSV season is still among us and we have not been able to take Getty out quite yet, so I am trying to find ways to bring the outside, inside. One of my attempts was to make sure all the windows were open so the natural light could come in and she could see all the activity outside. So far this attempt has become an epic fail for this mama.
We have two beautiful shade trees in the front yard and I thought perhaps buying a bird feeder would do the job. I had images of hundreds of song birds stopping in to say hi and then fly away. I thought for sure Getty and I would spend hours looking out the window in birdie delight. Doesn’t this look appealing?
I took great care filling the feeder up to the tippie top just so the birds knew I was serious. I even attached it with a yellow bow to show that I am bird friendly.
So if anyone has any ideas on how to attract some beautiful song birds, please let me know. Getty is enjoying Mr.Squiggles in his occasion food raids, but he kind of dines and dashes and doesn’t give her a chance to enjoy him.
But tomorrow is another day and perhaps a feathered friend will stop by to say hi.
Okay we are back into the swing of things. It is Wednesday and I have a lot of catching up to do for our SMA Warriors who will be gallantly running the CIM in December. Tonight I will be introducing 3 more amazing human beings ready to take the challenge for our Miss Getty as well as helping to raise $10,000 for research so we can help cure this horrible disease.
Every day we seem to get one more runner and then another. You are all so awesome and we are so glad to have you aboard.
Favorite Colors: Red, Black, Green, Orange
Hobbies: Soccer, Reading, Weight Lifting, Bike Riding, Softball, Listening to Music, Watching Movies
Interesting fact about yourself: I graduated with my teaching degree following the 27+ family members in the teaching field currently.
Have you ever ran a marathon: Ran one with my mother when I was three. Always taking time out of the run to catch lizards.
Had you ever heard of SMA? Not before January 2011
Bio: I was born and raised in a small town North of Reno, Nevada. Spent twenty years in the greater Reno area before moving to California to attend WJU. Graduated in 2009 with a double major Bible Theology & Liberal Studies with a Teaching Credential.
Favorite Colors: pink, black, blue
Interesting fact about yourself: At one time in my life I had 9 Great Dane puppies, and 4 chihuahua puppies in the house, they were only a couple weeks apart!
Have you ever ran a marathon? No
Had you ever heard of SMA before Miss Getty? No
I have 4 daughters who were all volleyball players at one point. After my girls, I love my dogs Claire and Jorge. One of my favorite things to do is watch my grandson, Zykah. I look forward to fighting SMA by doing this marathon. Miss Getty is one of the most beautiful babies I have ever seen and it’s time we find a cure!
Favorite color: Red
Hobbies: Being outside, friends, reading, helping others
Have you ever ran a marathon: No, so far I have only completed a half-marathon.
Had you ever heard of SMA before? Started learning about SMA one day in July after getting a call from Kate.
Interesting fact about myself: My daughter loves running and Getty as much as I do and she is only 4! 🙂
Bio: I am passionate about learning and sharing what I learn with others. My friends are my family. Both my kids recognize Getty and think of her as their sister. Working for the foundation feeds my passion for helping others, marketing, and learning.
Will thank you for joining the team, Kim thank you for stepping up as a mommy, and Takoa who knew we would be fighting a disease together at our age, we’ve known each other since pre-school and I love you.
We recently bought Getty a fishing pole and fish from Cerra. It is perfect for Getty because the pole is small enough and the end of the “fishing line” has a magnetic lure. Each fish also has a magnet so when the two meet, well that means she has caught a fish!
So Sunday night Getty had we very own fishing derby. I put her arm in her sling and I stuck the pole in the sling. She did amazingly! I was so proud of her. I think what struck me the most was that she made the connection between the white lure and the fish very quickly. Atta girl Getty! Your “Papa” (Grandpa) is going to be so proud of you when he sees your fine fishing skills.
I want to thank everyone that left comments, tweeted, liked on fb, etc. I had so much fun doing my first giveaway and right now I am giddy to announce who has won.
But before I announce I just want to reiterate how excited our family is to be a part of this album, Sweet Water Child~Lullabies for Getty. We simply can’t wait for the day when our family can just give hugs and smoochies to Alex, Angela, and Morgan. Watch out you three Getty’s smoochies are out of control, but they are good. 🙂
So there are five more people who will be a part of what we call Team Getty. You will now have a copy of the album and you too now have a mission to spread the word about SMA. And you thought you were just getting a free album.
So our Lovely Lullaby Winners are:
Thank you all for participating and I hope in the future I can do another giveaway. For those that have won, please email me at email@example.com and I will send you a free download.
I hope today finds everyone well. I woke up in the best way, right next to my little owl, doesn’t get much better than that.