CINCINNATI — Soraya Furuqui just turned 12. She loves her family, having long fingernails and playing with her dolls. She is wise beyond her years, in part, because she has to be — that's because Soraya is dying.
She knows this hard truth, and as best as she can, she has accepted it. For many people, this reality could mean long faces and tears in a household of three girls and a dog. But for the Furuquis, it means time is short and as a family, they've decided to "suck the joy out of life," said Dr.
Safi Furuqui, Soraya's dad. "She knows that she's getting tired," said Dr. Tasha Furiqui, Soraya's mom.
"She knows that she's getting weaker. And that is also excruciating watching her realization that things are being lost." Soraya's breathing is getting worse.
Her muscles are weakening. Her parents are doctors, but after countless tests and specialists examining Soraya, she remains "undiagnosed." In other words, there is no name for the disease that is robbing her of her life.
"They say that she is presenting just like childhood ALS without having the actual diagnosis," Tasha said. At some point, they realized naming Soraya's disease just wasn't important. They know what to do for Soraya to remain comfortable, and Soraya's sisters know how to make her laugh.
"Sucking the joy out of life" became a family motto after Soraya was granted a wish by Make-A-Wish, Safi said. Soraya chose to go to Hawaii and learn how to surf. "We can literally fill two full suitcases of medical stu.