Parent says Motrin caused child’s blindness

People who say they have suffered adverse drug reactions will be testifying at a hearing before the Food and Drug Administration. They are trying to draw attention to the health risks of some over-the-counter drugs. One of the testimonies will come from a 7-year-old girl who was the picture of health until she took a common pain medication that changed her life. NBC News correspondent Kevin Tibbles has the story.

Seven-year-old Sabrina Johnson spends every waking moment of her life in the dark. She is blind — even the slightest exposure to light hurts her eyes.

"I used to have to sit in a dark closet, with a hat on, sunglasses on, eyes closed and it was still too bright," says Sabrina.

How did this happen? To fight a fever, her parents gave her a simple pain medication, Children's Motrin, an ibuprofen product.

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"Instead of getting better, we had a child who got much sicker," says Joan Brierton-Johnson, Sabrina's mother.

Sabrina's doctors believe the Children's Motrin triggered a condition known as Stevens-Johnson Syndrome — also known as SJS. It blisters the skin, destroys the immune system and causes blindness.

"If I had known Stevens-Johnson was a possibility for my child, there's no chance she would have received this medication. It's way too big a price," says Brierton-Johnson.

It's cost some children their lives. Three-year-old Heather Kiss of New Jersey died in 2003 from SJS — a week after taking another ibuprofen product, Children's Advil.

Still, a leading epidemiologist says SJS is very rare.

"The risk of being struck by lightning is about one per five million, so this is in the same range as the risk of being struck by lightning," says Dr. David Kaufman.

In a statement to NBC News, the maker of Children's Motrin says:

“We are deeply concerned about all matters related to our products and we are investigating the situation."

Sabrina's parents are suing McNeil and its parent company, Johnson and Johnson, to force them to put warning labels about SJS on all boxes.

“I've been a pediatrician for 25 years. I never recommended Children's Advil or Children's Motrin ever, not once,” says Dr. Jay Gordon, Sabrina's pediatrician.

“I would rather see Motrin and Advil as prescription medications because I think they have more side effects than acetaminophen — Tylenol-type medications,” says Gordon.

Still, for Sabrina, it doesn't matter whether her condition is rare. For her, it's real.

Brother Travis helps with homework, Mom puts eye drops in Sabrina’s eyes twice a day, and they've crossed the country seeking the best doctors.

What is it like being the mother of a child who has to go into surgery 18-plus times? "It'll kill you,” says Sabrina’s mom.

Brierton-Johnson now hopes for the day when her little girl can see the world with her own eyes again.