Getty Owl Foundation

7 Years and Growing!

From Kate,  Getty turned 7 years old on Saturday, March 25th. Check out this incredible cake!  A beautiful cake that seriously blew everyone away! Fitting that the warrior chief, Moana stands confidently on top. Thank you Lorraine for all of your hard work and incredible talent.  Getty had a great day. Lots of smiles and squeals. She received some legos, Troll things, and lots of clothes. It was nice to have a day to just celebrate Getty. We didn’t need to discuss anything else besides how awesome it was that she was now 7 years old.  Birthdays are always a bit emotional for me. I just kind of compartmentalize everything until the festivities have finished and then I can have a little time while Getty sleeps to reflect on what 7 years mean. It is a big deal. Every single day, every movement, every celebration, every squeal. Everything is a big moment, and to know that we have had and will continue to have time to watch her grow and kick butt is just an incredible honor. She continues to teach determination and fortitude.  Her little being continues to strive for all the good life has to offer. She makes everyone around her better.  Happy Birthday sweet lady. We all love you so very much and we stand in awe of your curiosity and strength to do every single thing you want to do without feeling any boundaries. Please continue to steer this ship, we will always be your loyal mates. 🙂   

A New Chapter

From Kate:  Tomorrow marks a very important and special day for Getty and our entire family. March 21st will be the beginning of a new chapter in her life. Tomorrow Getty will be getting her first treatment of Spinraza. On December 23, 2016, Biogen’s groundbreaking medicine called Spinraza was approved by the FDA. Since approval we have been discussing next steps with her doctors. We have been very impatiently waiting, as you might have guessed.  We have been waiting for something, anything, since July 30, 2010. It has been roughly, 2,340 days since Getty’s diagnosis. Being told your child would not make it to see their second birthday was a hit to the gut, head, heart, and soul. Looking into Getty’s blue eyes and being told that our time is limited just didn’t make sense. Looking back on that day, sitting together in silence not knowing what to think or how to even wrap our head around what our sweet Getty has possibly been dealt, when we just needed to look into her eyes and follow her lead. She has always been steering this ship. Getty has always been present in her wishes to blow life out of the water, every step of the way. She inspires all that meet her. She brings laughter and smiles to everyone. Getty is a powerful force that makes you just want to be good, bring good to others, and feel content in what life has to offer.  We are in a new chapter of life. We started out life without SMA, then with SMA, and now a new chapter that comes with a medicine to help Getty continue gallantly fighting SMA. We are just so thankful and incredibly mindful of what gift has been bestowed to Getty.  I made this video for Getty the day the FDA approved Spinraza. I was so overwhelmed with emotions on that day, let’s be honest, I have been an absolute wreck since. ;). To realize that in her lifetime there could be something to help support in her fight to live, was really too much to handle. So instead of processing it, I made a video.  This is what Getty decided to do after she was diagnosed with Spinal Muscular Atrophy…………….she decided to live and we decided to follow her lead.   

iPad Mini Recipients Announced!

From Kate: We are so excited to announce our new 4 recipients of an iPad Mini. Thank you to the SMA community for supporting our foundation with your participation. While technology covers a vast spectrum, Apple’s  iPad has really done a great job of creating a bridge to communication, socialization, and education for so many children and adults with Spinal Muscular Atrophy. Getty Owl Foundation is committed to giving as many people with SMA the ability to soar with technology.  We have witnessed first hand the remarkable opportunities Apple’s iPad has given to Getty. She can participate in recess play and visit family during the winter months with FaceTime. Math and spelling apps give Getty the ability enjoy learning and pushing herself to new heights. Watching and listening to audiobooks allow her to acquire language and develop her ability to imagine. Whiteboard apps, give her time to review and spell words. There really is an app for anything she needs.  Congratulations to our newest 4 recipients. Enjoy and soar to new heights. 🙂 

Madison Reed

20 years old

 

 

 

Sara Greene

14 years old 

 

 

 

 

Javier Medina

1 year old

 

 

 

Cooper Heller 

7 months