Getty Emelia Storm was born on March 25, 2010, in Roseville, California, to her parents, Kate Mathany and Mark Storm. We live in Sacramento, California.
We noticed Getty had a very calm demeanor, like she was born a wise and kind old soul. Getty also enjoys hooting in addition to her bright blue eyes, well it was fitting to call her our little owl. We also call her Getty Spaghetti just because it’s fun to say.
At age 3 months, we noticed Getty was not lifting her head or meeting other movement milestones for her age. Our pediatrician felt it was little cause for concern, attributing it to simple developmental delay.
On Friday, July 30, 2010, at age 4 months, we took Getty went to her routine pediatric visit for a check-up. We again raised our concern about Getty’s lack of movement. That day, Getty was diagnosed with Spinal Muscular Atrophy (SMA). Based upon the fact that she never sat up without help, she was diagnosed with SMA Type 1.
Despite the tragic news, Getty is a very happy little girl. The diagnosis does not keep her from smiling and laughing every day. We knew we did not want SMA to define her life and we decided early on that we would do everything in our power to make sure Getty has the best life possible.
We immediately reached out to the SMA community, where they were welcomed by open arms and big hearts. Getty’s life would be nowhere near as fruitful as it is today without the support from the SMA community. To better raise SMA awareness, assist other families affected by SMA, and accelerate research for a cure, we launched Getty Owl Foundation in Getty’s name and honor.
To find out more about SMA, click on the “What is SMA?” link. We also have a FAQs page and a SMA Library available to learn more about SMA, assist the newly diagnosed, join the fight, find a cure, and find out more about some of Getty’s friends and supporters.
