She’s doing everything she can to seem OK. But this mom’s 13-year-old is slowly dying.
USA TODAY
Tasha Faruqui, 44, is a working mom in Cincinnati, Ohio. Her daughter, 13-year-old Soraya, is dying of a rare disease.
Dr. Tasha Faruqui knew something was wrong days after her second daughter, Soraya, was born.
Faruqui, a pediatrician, said she went through years of "medical gaslighting" before her daughter was properly diagnosed with TAOK1, a rare genetic disorder that causes developmental delays. Symptoms vary widely, and while the other few dozen people with TAOK1 do not find the condition life-limiting, Faruqui said, Soraya's is fatal.
What started as difficulty feeding as an infant now means that 13-year-old Soraya is slowly losing her mobility and her internal systems are shutting down.
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In 2022, doctors gave Soraya a prognosis of two years to live. Now past that date, it's a waiting game. Faruqui started an Instagram account where she posts about her family and Soraya's condition. Most recently, Soraya started using a bedpan and stopped going upstairs, even with a chairlift.
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