Getty Owl Foundation

Team Getty Runners: Shiloh, Linsey & Megan

From Kate:

It is Wednesday, you know the drill. More and more runners stepping up to be a part of this challenge, experience, and journey. Every time I write this post I am always so impressed and in awe of what all of these runners have signed up to do. Raising money for research to help find a cure for SMA, raising awareness about the #1 genetic killer of infants, and raising the bar for our community. All of you commitment is very humbling, thank you all. Tonight I introduce you to Shiloh, Linsey, and Megan.

Shiloh Harrison
Age: 28
Birthday: Oct 22
Favorite Colors: Baby poop green
Hobbies: Refurbishing Antique Furniture, Acrylic Painting, Interior Design, Writing
Interesting fact about yourself: I have traveled to 14 countries, seven of which were in Africa (my favorite continent).
Have you ever ran a marathon: Nope
Had you ever heard of SMA? I had never heard of it before Morgan Saunders taught me about it.

Bio: I am currently an Admissions Counselor at William Jessup University. Prior to this I was a Youth Pastor and was living in Manhattan while attending Graduate School at New York University. I love to read, paint, journal, mentor, play basketball, and be with friends. I am excited about challenging myself to do something like this and hopefully help Getty find full healing and health!

Linsey Pearson
Age: 18
DOB: 8-5-92
Favorite Colors: Green
Hobbies: Babysitting & Riding my bike 🙂
Interesting fact about yourself: I am the youngest of five kids, but I feel like the oldest.
Have you ever ran a marathon: I have not but I would love to!
Had you ever heard of SMA? I have from my cuzzy Morgie

Bio: I come from a family of 5 kids, which landed me with 3 older sisters and 1 older brother. I love my family to pieces. I look forward to running the relay with my sisters. I think that it is cool to help Getty by running a marathon. I am glad to be a part of this cause.

Megan Frederick
Age: 23
DOB: 6-11-87
Favorite Colors:
Hobbies: Black n White:)
Interesting fact about yourself; I love people!
Have you ever ran a marathon: nope, never.
Had you ever heard of SMA?
At a photoshoot my husband did he met a beautiful little girl with the biggest, prettiest blue eyes. Unfortunately Little Getty was diagnosed with SMA, but ever since we found out about her and SMA we have been helping to fight♥

Bio: I am a wife of 2 years to a fellow runner Tyler Frederick, and have been blessed with a now 14 month old son and a baby girl due June 10th. Words can not express the love I have for my babies and God has truly amazed me with Zykahs love in return.  We are glad to partner to help this beautiful baby out. Go Team Getty! Let’s help find a cure!

Getty Bunny!

From Kate:

This year being Getty’s 2nd Easter, we wanted to make it extra special. We were telling her yesterday that the first time we celebrated as a family she was as small as a jellybean and now she is a little lady. Wow, how times flies!

The night before, Mark, Getty and I decorated some eggs. We put Getty in her arm slings and we went to town, decorating all 12 eggs.

                                        Pre-egg dunking! Busy Bee!

                                      Playing with the egg.

                                       One is certainly not enough!

                                        Getting a little help from Daddy!

                                       Enough said!

                                       Getty is certainly not camera-shy. 🙂

[youtube=http://www.youtube.com/watch?v=l5JOI8dTQMc]

Easter Sunday, Grammie and Papa came over for dinner. We got Getty in her Sunday best and we had dinner and hung out as a family. We had a very relaxing time.

                                        Where’s the Easter Bunny?

                                        Yum eggs!

Special Moments

From Kate:

A digital camera and video have been so vital to us since Getty’s diagnosis. I would hate to think what we could have missed without capturing some really incredible moments. Had Getty been a healthy child and hitting the usual milestones I have a feeling that every flicker of a finger, every smirk would have been in a way overlooked because I would know that there would be more to come. Or heaven forbid I might not have even noticed the rotation of a wrist because that is “normal”.

Tuesday, Getty got her annual immunizations and since then she hasn’t been feeling her usual spunky self. Her oxygen levels are lower and so we are just watching her a lot more closely. A child with SMA is an intense experience. Both physically and emotionally. Their care is 110% if it were possible. So when her O2 sats dropped into the lower 90’s we started getting into trouble shooting mode. Constant vigil due to the fact that anything can change in a moment and then you need to make some decisions. Do you handle things at home and try to remedy the situation or is this situation greater than us and now we need to allow Getty to be in the hands of professionals that don’t know much about SMA? Scary to say the least.

After a lot of diligence and care as of tonight, Getty’s O2 levels are slowly coming back up and her spunky self is started to surface.

It is Friday night and Mark and I are pooped. I am sure some people out there are enjoying a Friday night out and about with a loved one. Perhaps sneaking out for some couple time away from their little bambino. I am envious, but not jealous. I only ask one thing, “could you do me a favor and have a beer for us?” 🙂 Just one, thank you.

So this week while we have been monitoring Getty, I have pulled out the camera several times and video a couple of times to capture special moments.

Yesterday Grammie came over and spent some precious moments with Getty. Thank you Mom for coming over and 1) Bringing dinner and 2) Giving me a short break so I could just do some normal things. I actually enjoyed sweeping the floor, cleaning the bathroom, and doing a bit of laundry. There is something therapeutic in doing household chores. It gave me a chance to clear my mind and to concentrate on some else besides Getty for only moment, but it was enough to kind of recharge. While I was cleaning I was hearing all kinds of giggles coming from our room so I grabbed the video to make sure I didn’t miss a thing. Getty sure loves a good dose of Grammie. I love you Mom!

[youtube=http://www.youtube.com/watch?v=loNXUHLEI6M]

When I was a kid, I always seemed to wake up early on special occasions. Christmas, Easter, etc. once I was up, well everyone needed to be. Getty has certainly taken after her mama. Mark has been working very hard on a case all week and adding to that has been helping care for Getty. He took a very quick nap to rejuvenate.  Little Miss Getty was also sleeping along side of him. She woke up shortly after and wanted to get going. So her next plan of attack was to wake daddy up as well. I felt bad for Mark because his nap was cut short, but it was so darn cute to watch her wake him in such a forceful way. 🙂

[youtube=http://www.youtube.com/watch?v=1LvtZDw-cew]

The video is kind of dark, but her sweet little right hand is holding some of her birthday balloons and she is beating her daddy with them, and I think she is saying, “Dad, Dad, Dad, wake up!”

I hope everyone has a very special Easter. Getty’s Easter basket is all ready to go and we can’t wait to celebrate with her. We are truly blessed.

Running Machines

From Mark:

Team Getty Runners have a Facebook Page! Check it out here! We are so proud of the Team Getty Runners as they champion the cause, raise awareness, and race toward a cure for SMA.

We encourage all the Team Getty Runners to fund raise through the Crowdrise site for Getty Owl Foundation. Funds raised will help end SMA and support an impressive Gene Therapy research program through Dr. Kaspar at Nationwide Children’s Hospital /The Ohio State University. His program needs funding to move toward clinical trials.

Here is this week’s featured runners:

My name is Elika Bernard and I am currently rockin the English major at William Jessup University.  I live my life to the fullest so why not participate in a marathon? I look forward to joining such a worthy cause! Go Team Getty!

Name: Mindy Lew
Age: 30
DOB: 1980
Favorite Colors: Blue, Magenta
Hobbies: Reading
Interesting fact about myself: Like to watch television marathons on DVD.
Have you ever ran a marathon: No
Have you ever heard of SMA? Yes, from Morgan Saunders
Quick Bio: Youngest sibling of four. Half Chinese and Half Filipina.

I decided to sign up for the marathon as part of Team Getty because I heard about SMA from my friend, Morgan Saunders. She shared a story, and very cute pictures, about this amazing little girl, Getty, and her family’s efforts to gain support for her needs and find a cure. I wanted to support their efforts to give their daughter a fighting chance and raise awareness about SMA. I’m not a runner, but I thought that the least I could do was be a part of the walking relay team.

Name: Kimberly Spencer
Age: 21 (in 2 weeks, so by the time we race)
DOB: May 9, 1990
Favorite Colors:Caribbean Blue and yellow and sea foam green
Hobbies: Running, Reading, Yoga/Tybo/Zumba
Interesting fact about yourself; I spent the last St. Patrick’s Day in Dublin Ireland.
Have you ever ran a marathon: No
Had you ever heard of SMA? No

Quick Bio:  My name is Kim Spencer.  I run Cross Country at William Jessup University, where I met my love, Chadd Baltzley.  I am an English major. I am also currently studying abroad and I love it!  Looking forward to running my first marathon!

Awareness

From Kate:

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!