One Little Girl's Heroic Battle With Stevens Johnson Syndrome

July 6, 2012, 2:00PM. By Gordon Gibb

Boston, MAIt's a story that would break any parent's heart. A Stevens Johnson Syndrome story that does, indeed have a happy ending. And its aftermath has served to benefit scores of people beyond the one life from whence it all began. But at the time, back in 1994 when a young toddler was diagnosed with SJS, the crisis was riveting and appeared to have no end, if little hope.

Julie McCawley was just 10 months old when she suffered a grandmal seizure, according to her mother Jean. Phenobarbital was prescribed to control idiopathic epilepsy. Jean's doctor indicated the only side effect was drowsiness.

Writing an account of their horrific journey in a blog post on the Stevens Johnson Syndrome web site, Jean McCawley describes how her daughter awoke one morning with her right eye swollen shut. That evening her left eye had swelled. By the next day, Julie had developed blisters in her mouth from emerging Stevens Johnson Syndrome symptoms, and could no longer take a bottle.

At the time, prior to the diagnosis of Stevens Johnson Syndrome skin disease, Julie's family had no idea what they were dealing with. Nor did the doctors. But everyone knew it was serious. Now in hospital, Jean shared that her infant daughter "looked like she had been deep fried…"

Within a week, Julie was finally diagnosed with SJS. Her mother writes that initial relief upon finally learning what was at the root of Julie's troubles was short-lived when her doctor said, "Jean—this is not a good thing."

The battle to mitigate Julie's Stevens Johnson Syndrome symptoms intensified. Jean writes that her daughter was debrided daily in the hospital burn unit and wrapped in bandages. At 10 months old, she required a feeding tube and was on morphine for pain.

"Her lungs collapsed and she [developed] a swallow disorder," Jean writes. "She did not hear until she was 18 months old. The blisters in her ears had ruptured and wept over her eardrums. They had to be removed by an Ear [sic] nose and throat doctor. On her first Birthday [sic] I was told my baby was going blind.

"We almost lost her several times," the little girl's mother continues. "One night my entire family came up to the hospital to say good bye to her. Somehow Julie survived."

But not without paying a price. Julie would lose all of her sight in her right eye, and was left with low vision in her left—together with photophobia and dry eye syndrome. A fitting for a scleral contact lens at the Boston Foundation for Sight when Julie was four years old served to reduce the severity of her photophobia by half, and also helps with her dry eyes.

Today, the survivor of Stevens Johnson Syndrome is a lovely young woman. And in the wake of her daughter's early heroic battle for life, Jean McCawley founded the Stevens Johnson Syndrome Foundation - Julie Foundation for Allergic Drug Reactions. More recently, McCawley has begun to lobby legislators to proclaim the month of August as SJS Awareness Month as an ongoing effort to further educate Americans about the horrors, and treatment options for Stevens Johnson Syndrome.

The Boston Foundation for Sight, in a June blog post (6/21/12), noted that early diagnosis and treatment of SJS rash can help minimize symptoms and foster better survival rates from Stevens Johnson Syndrome skin disease.