Dana’s pregnancy was exciting to follow—from the earliest baby-bump pictures all the way to the arrival of her firstborn—Aria, a perfectly beautiful baby girl. Dressed in pink with a ribbon-adorned headband, Aria instantly captured the hearts of her mom, dad CJ, and adoring family and friends. I loved the picture-post updates of this precious baby with her luminously expressive eyes.
At Aria’s two-month check-up, the doctors became concerned about her small size and poor muscle tone. Tests, specialists, and tense waiting followed.
Just a couple weeks later, the doctors confirmed the worst news—she had Type 1 spinal muscular atrophy (SMA)—a terminal disease with no cure.
Aria’s grandma Veda describes SMA as a children’s Lou Gehrig’s disease. As horrible and daunting as that sounds, this family treasures each day they have with Aria and are sharing her story to raise awareness about SMA—the genetic disorder that claims the lives of infants and children.
August is SMA awareness month. And even though Aria lives in a tiny woodland community, her story is reaching well beyond her small town. While there is presently no cure, research is promising. Aria’s Aunt Kristin researched SMA and found CURE SMA—a national organization that has already raised $57 million for research.
Later this month the family will have a local fundraiser #SMAshSMA. They’re also participating in the 2015 Pacific Northwest Walk-n-Roll September 12. Your donation will bring hope to Aria’s family and other SMA children. Click: team-aria.org.
Aria’s life will be far too short, so every day is a treasure. SMA families know this. Let us all think of Aria and give thanks for those we love.
Perhaps that’s Aria’s gift—teaching us to see every day as a present to open and share with extraordinary love.