The Savannah Morning News ran a great story yesterday about Skylar Swanson and her family of Richmond Hill, Georgia. After she and her twin sister Cassie were diagnosed with Spinal Muscular Atrophy ten years ago, Skylar’s family started SMA Angels Charity. Representatives of SMA Angels Charity, including the organization’s president and the twin’s grandmother Anne Meguiar and Board of Directors member Bubba Summerlin, have repeatedly joined FightSMA for its Annual Conference in Washington, D. C. and have met with Georgia’s Congressional representatives on issues including the SMA Treatment Acceleration Act.
From the article:
Butterflies follow 10-year-old Skylar Swanson.
They perch on her wheelchair, her suction machine and oxygen tube. Some even land on her strawberry blonde hair, on the tip of her finger or near her yorkie who rides on her lap.
The Richmond Hill fifth-grader, whose muscles are so weak she can’t walk or hold her head up, has a simple explanation for the butterflies.
Skylar says her twin sister, Cassie, sends them to her from heaven. Skylar’s identical twin has become her guardian angel.
When Cassie died last June, Skylar didn’t know a day without her twin.
The two girls were born with spinal muscular atrophy, an inherited neuromuscular disease that’s the No. 1 genetic killer of children younger than 2.
Up to one in 6,000 children are born with the disorder. Many are unable to stand, walk or even breathe without assistance.
The twins’ parents, David and Dana Swanson, had a choice: provide respiratory aid and ongoing, noninvasive care to keep the twins alive.
Or do nothing, beyond keeping the girls comfortable without breathing assistance, knowing the twins would die sooner.
They chose to fight for life.
To read the entire article, visit click here. Also, mark your calendars for SMA Angels Charity’s 10th So Many Angels Ball being held November 17th at the Savannah International Trade & Convention Center.