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 from what appears to be a rare type of ALS that progressively deprives sufferers of the ability to move, speak, eat and breathe.
His breathing is deteriorating and his muscles are weakening and doctors still cannot offer a definitive diagnosis after years of tests.
Soraya Faruqui, front, center, with sisters Yasmeen and Leena, and parents Safi and Tasha.
The little girl has suffered and deteriorated since birth with a ‘constellation of symptoms’
‘Whether she likes it or not, whether she likes it or not, this process that is happening to Soraya is coming and it is going to take her life,’ said her father Safi Faruqui.
‘So, we have a choice. We can try to take the joy out of life and get as much joy as possible before the pain inevitably comes.’
Soraya couldn’t take a bottle and quickly lost weight in the days after her birth, and doctors discovered she was inhaling food every time she swallowed.
He suffers from a “constellation of symptoms,” including global developmental delay, G-tube dependence, progressive muscle weakness, and dependence on a nighttime ventilator.
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.
Dad Safi and mum Tasha are doctors and were terrified at the prospect of taking their sick daughter and her two sisters on a plane.
“We can literally easily fill two suitcases full of medical supplies when we travel,” his father said.
“So I thought, ‘How are we going to do this?’ And Make-A-Wish said, ‘We got it.’
Soraya chose Hawaii as her dream destination and her parents enjoyed the “most beautiful moment of their lives” when 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 he 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,” he said.
Dad Safi and mum Tasha are doctors and were terrified at the prospect of taking their sick daughter and her two sisters on a plane.
Since then, the family has decided to take a trip every three months in an attempt to “take the joy out of life.”
“We’ve done these little trips where we’re like, ‘Let’s do this,'” Safi said.
‘Alright, do you want to go to Hocking Hills? Okay, we’ll figure it out.’
‘In this situation, it would be very easy to just turn around and essentially just try to survive and just survive.
“But whether you like it or not, this process that is happening to Soraya is coming and it is going to take her life.
‘So, we have a choice. We can try to take the joy out of life and get as much joy as possible before the pain inevitably comes.’
The family remains desperate to make progress to stop their daughter’s deterioration and discover its cause.
“It presents as childhood ALS without having the actual diagnosis,” said mother Tasha Faruqui.
‘She knows she’s getting tired. She knows she is getting weaker. It is also unbearable to see her realize that she is missing out on things.”
“It’s like being in the ocean and seeing the hurricane coming from a distance and knowing that you can’t stop it,” his father added. “He’s coming for you.”
The family has created an Instagram page to document their struggle and inspire others, and recently appeared at a Prolink Wish Gala in their hometown.
“When Make-A-Wish came, everything changed,” little sister Leena told the crowd.
‘And our family changed in an amazing way. We started doing a lot more. Get out of the house and try to find joy in a dark time.’
Soraya herself took the microphone and bravely told the audience: ‘I’ll die sooner, but today I’m making memories, 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,” his father said. “He’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 solve this, we must pay for it. 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 saying ‘when you grow up, you’ll do this’ and contribute to society.” “She is going to make a difference now.”