FARMINGDALE, Maine (NEWS CENTER) -- It is the most common disease you likely haven't heard of... Spinal Muscular Atrophy. The disease is the number one genetic-cause of death in children under the age of 2, and a family in Maine is making it their personal mission to help find a cure for SMA.
Emily and Ethan Bessey had never heard of Spinal Muscular Atrophy when their four-month-old was diagnosed with the fatal disease.
"We were sitting the neurologist's office," says Emily Bessey. "He's giving us this information and we're in complete shock."
Bessey says the next four months were spent learning as much as they could about SMA, whilst cherishing every smile and every laugh of their son Ezra. They also needed to explain to their 3-year-old, Daisy, that she would lose her baby brother.
"She would say, Ezra I love you. And I miss you. And I don't want you to die. You'll always be my brother. You are kissful and cuteful. And then she would say, this is a loving message."
In his home on February 5, cradled by Mom, Dad, and Daisy... 8-month-old Ezra passed away.
The Bessey's have been documenting their journey on a blog named, Sweet Ezra. Bessey says so far, Sweet Ezra has received more than 100,000 views in more than 50 countries. Their foundation, Hearts for Ezra, is raising money for awareness and research of SMA. The foundation is named after the hundreds of heart-shaped rocks the Bessey's have received as a result of their blog, to be placed at Ezra's grave.
"It's a very beautiful symbolic way for people to share their love with us. I get teary-eyed because I feel like Ezra is doing all this amazing outreach to the world and he was only 8 months old."