For Patients

Facing Uncertainty

Patient: Ian Gonzalez
Diagnosis: Stevens Johnson syndrome
Sight Restored: November 2009

In December 2007, Ian, son of Maria Teresa and Javier Gonzalez, was admitted to Children’s Hospital in Mexico City suffering with Stevens Johnson syndrome (SJS), a rare life-threatening allergic reaction. Severe cases have been described as “burning the body from the inside out” and ocular complications can include inflammation, chronic pain, tissue damage and scarring that can result in blindness.

Ian’s best hope for survival lay in his transfer to the Shriners Hospital for Children Burn Center in Texas. Almost Christmas, the wrenching decision was made for Javier to stay home with younger son, Andre, while Maria traveled to Texas with Ian.

Ian’s recovery was a long and difficult journey that included bouts with pneumonia and sepsis. Miraculously he held on, finally improving enough to go home. But life wasn’t the same. Ian’s eyes were extremely painful and light-sensitive. He had to wear sunglasses and a hat indoors, and his teacher had to keep the classroom shades down. All Ian wanted was to “be a normal kid” again.

In 2009 Maria learned about BostonSight through an online SJS community. A group effort lined up insurance coverage and financial support to travel to Needham for BostonSight PROSE treatment. Today, Ian is a vibrant boy who loves soccer, the beach, horses and laughing. Maria and Javier finally have their son back.

Recently Maria and Ian returned to BostonSight for SJS Kids Week. Maria: “It was an honor to meet other parents and SJS survivors. It was one of those magical moments that Ian will always treasure in his heart, and so will I.”

PROSE patient Ian Gonzalez with Lynette Johns, O.D.

“The most intimidating part of a child’s first visit is the uncertainty. Even though we faced a language barrier, once Ian was wearing his devices his contagious smile and complete confidence won over. I was so proud to witness his experience and I am blessed to share in his care.” — Dr. Lynette Johns

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