CINCINNATI — Soraya Faruqui 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 Faruquis, it means time is short and as a family, they've decided to "suck the joy out of life," said Dr. Safi Faruqui, Soraya's dad.
"She knows that she's getting tired," said Dr. Tasha Faruqui, 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 stuff easily when we travel," Safi said. "So I'm like, 'how are we gonna do this?' And Make-A-Wish was like, 'We got this.'"
Flipping through the glossy pages of photos of the family's trip to Hawaii, you can see the happiness jumping off the pages. Professional photographers captured their trip.
There is also video of Soraya standing proudly on top of a surf board, riding a wave.
"It was the most beautiful moment ever," Tasha said.
"It was the most fun I ever had as a family," Soraya said. "And it was just... easy."
The entire family got to experience relatively carefree fun. They made memories. They had a joyful time.
That trip changed how the family approaches life, the Faruquis said. With three daughters to raise, they adopted "suck the joy out of life" and became determined to practice it with all of their kids. They demanded that their other two daughters, Yasmeen and Leena, go to parties and events instead of just spending time at home. And every three months, they went on an adventure of some sort.
"Since that time, we've done these little trips where we're like, 'we're going to do this,'" Safi said. "Alright, you want to go to Hocking Hills? Alright, [we will] figure it out."
The Faruquis felt their only other choice was sadness that they know will eventually come.
"In this situation it would be so easy just to turn in and essentially just try to survive and only survive," Safi said. "But whether or not you like it or not, this process that's happening to Soraya is coming and it's going to take her life. So we have a choice. We can either try to suck the joy out of life and get as much joy as you can before the grief inevitably comes."
The Faruqui family recently stood before a crowd at the Prolink Wish Gala and told their story. The girls were dressed in gorgeous gowns, with their hair professionally coiffed and nails polished. Family and friends came to Cincinnati and to the event to celebrate with the Faruquis.
Soraya told the crowd without tears and with a smile, "I am dying sooner, but I am making memories today, so look out."
Her older sister, Yasmeen, explained to the crowd how Make-A-Wish gave their entire family the gift of happiness. And her little sister, Leena, barely able to reach the microphone on the podium said, "When Make-A-Wish came, everything changed. And, our family changed in an amazing way. We started doing a lot more. Getting out of the house and trying to find joy in a dark time."
Tasha started an Instagram page to share what it's like living with a child who has challenges like Soraya's, as well as the challenges behind running an entire family and maintaining jobs at the same time. She's found it has helped her and her husband communicate better. Even her daughter, Yasmeen, has watched the videos and found herself able to understand her parent's perspectives. Tasha hopes the page brings light for what other families who are dealing with similar situations.
"I say this to Safi all the time," Tasha said. "This pain that we feel must have a purpose. If we can't figure this out, we must pay it forward. We must use it to help others. And, at the end of the day, I want Soraya's life to matter. She doesn't have the luxury of 'when you grow up, you will do this' and contribute to society. She's gonna make a difference now."
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