Her Story
Her Story
One in a million...
We knew she was one in a million. We knew it all along. But we didn't learn until December 2015 that our beautiful daughter, Raina, had been born with FOP, a genetic mutation that occurs in just one baby of every two million. She's had it since conception, but it is rare and little-known in the medical community so she was not diagnosed until December 20, 2015, a day we will never forget. When we found out what the genetic mutation meant for this amazing little girl, our world turned upside-down.
Go ahead and read about it here. You'll see why.
Our sweet Raina is a strong, beautiful, optimistic and very intelligent kid. And we have rallied an army, a village, and a devoted fan base to help keep her strong and hopeful.
Amazing strides have been made with FOP research in recent years since the gene was discovered in 2006, and there is a great deal of hope for her future. Supporting FOP research now is more critical than ever.
This site is dedicated to Raina and her tribe. Want to enlist?
Photography and Web design by Grindstone.
She Shines
YOU MAKE US HAPPY WHEN SKIES ARE GRAY
She Shines
YOU MAKE US HAPPY WHEN SKIES ARE GRAY
Where There's Hope
WHERE THERE'S HOPE, THERE'S LIFE.
ANNE FRANK
Where There's Hope
WHERE THERE'S HOPE, THERE'S LIFE.
ANNE FRANK