Girl, 12, baffles doctors who say she’s dying – but they don’t know what her disease is
An Ohio family is on a mission to make memories before a mysterious illness takes the life of their 12-year-old daughter.
Doctors suspect Soraya Faruqui is dying of what appears to be a rare form of ALS, which gradually robs patients of the ability to move, speak, eat and breathe.
Her breathing deteriorates and her muscles weaken, with doctors still unable to make a definitive diagnosis after years of testing.
Soraya Faruqui, center front, with sisters Yasmeen and Leena, and parents Safi and Tasha
The little girl has suffered since birth and has deteriorated with a ‘constellation of symptoms’
“Whether you like it or not, the trial that is happening to Soraya is coming and it will cost her her life,” said her father Safi Faruqui.
‘So we have a choice. We can try to suck the joy out of life and get as much joy as possible before the sadness inevitably comes.”
Soraya couldn’t tolerate a bottle and lost weight rapidly in the days after her birth, with doctors discovering she was inhaling food every time she swallowed.
She suffers from a ‘constellation of symptoms’ including general developmental delay, G-tube dependence, progressive muscle weakness and dependence on ventilators at night.
But when the Make-A-Wish foundation offered the Cincinatti family a vacation, they decided to make the most of the time they had left.
Father Safi and mother Tasha are both doctors themselves and were terrified at the prospect of taking their sick daughter and her two sisters on a plane.
“When we travel, we can literally fill two full suitcases with medical supplies,” her father said.
“So I’m thinking, ‘How are we going to do this?’ And Make-A-Wish said, ‘We’ve got this.’
Soraya chose Hawaii as her dream destination and her parents enjoyed their “best moment ever” as the little girl triumphantly rode a surfboard for the first time.
“It was the most fun I’ve ever had as a family,” Soraya said. “And it was just easy.”
But she triumphantly mastered surfing during a vacation to Hawaii organized by the Make-A-Wish Foundation: “It was the most fun I’ve ever had as a family,” she said
Dad Safi and mom Tasha are both doctors themselves and were terrified at the prospect of taking their sick daughter and her two sisters on the plane
Since then, the family has decided to take a trip every three months in an attempt to “suck the joy out of life.”
“We went on little trips where we were like, ‘We’re going to do this,’” Safi said.
“Okay, you want to go to Hocking Hills? Okay, we’ll figure it out.”
“In this situation, it would be so easy to just turn inward and essentially just try to survive and just survive.
“But like it or not, the trial that is happening to Soraya is coming and it will cost her life.
‘So we have a choice. We can try to suck the joy out of life and get as much joy as possible before the sadness inevitably comes.”
The family remains desperate to find a breakthrough that will slow their daughter’s decline and find out what caused it.
“She presents just like childhood ALS without the actual diagnosis,” said mother Tasha Faruqui.
‘She knows she’s getting tired. She knows she is getting weaker. That is also unbearable, when you see how she realizes that things are being lost.’
“It’s like being in the ocean and seeing the hurricane coming from a distance and knowing you can’t stop it,” her father added. “It’s coming for you.”
The family has set up an Instagram page to document their struggles and inspire others, recently appearing at a Prolink Wish Gala in their hometown.
“When Make-A-Wish came along, everything changed,” sister Leena told the audience.
“And our family changed in a wonderful way. We started doing a lot more. Leaving home and trying to find joy in a dark time.”
Soraya herself took the microphone and bravely told the audience, “I’m going to die before, but I’m making memories today, so be careful.”
“It’s like being in the ocean and seeing the hurricane coming from a distance and knowing you can’t stop it,” her father said. “It’s coming for you.”
“I tell Safi this all the time,” her mother said.
“This pain we feel must have a purpose. If we can’t fix this, we’ll have to pay it forward. We must use it to help others.
“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’re going to do this’ and contribute to society. She’s going to make a difference now.”