The 42-year-old woman has Leber congenital amaurosis, a form of inherited blindness that left her unable to see colours, faces, and letters from a very early age.
The disease often strikes in an infant’s first few months of life.
However, a group of McGill University medical doctors and researchers have found a way to partially restore the vision of thousands of people with the disease, which had been untreatable until now.
Fex has been a patient of the study’s lead doctor Robert Koenekoop since 1997.
One day, he told her he had some medication he wanted to try on her to see if it would help her vision. She agreed, becoming one of 14 patients recruited to the study between 2009 and 2011.
The medication was a replacement for the 11-cis visual pigment people with Leber congenital amaurosis are missing.
She received her first treatment in 2010, and said she noticed a difference by the second or third dose.
“After the medication, I could recognize some letters,” Fex said. She said being able to do otherwise impossible tasks was “amazing.”
“You feel incredible because you never thought it would happen,” she said.
The treatment is far from perfect, but research shows promise. Of the 14 study participants, 11 returned to their baseline vision two years after receiving the week-long treatment. However, three sustained improvements.
Fex is one of them. She thanks the treatment for being able to enjoy some of life’s simplest pleasures, especially cooking.
“Just being able to read your bill, to cook and not have the danger of burning yourself,” she said.Suggest a correction