SJS Kids Week

Memories to Last a Lifetime

Goody bags- something for everyone!

Meet Julie and Stephanie; Maria and Ndeye; Kephart and Jesse; Kayla and Karyl; Ian and Shane; Isaac and Zachary; Qar-Zma and Maria; Max and Ian; Bailey and Mariam. What do they have in common?

They are vibrant, sensitive, inquisitive and lively children. They range in age from 5 to 19 and come from Massachusetts, Maryland, Colorado, California, New York, Illinois, Washington, Texas, Mexico, Canada and Africa. They have parents and siblings who love, adore and would do anything for them. And they are Stevens Johnson syndrome (SJS) survivors who can feel isolated, alone and often bullied by their peers.

Mild cases of SJS can cause irritation and dry eyes; in severe cases, it can lead to extensive tissue damage and scarring that can result in blindness.

In 2010, these survivors and their families came together for the first time for a unique event - Stevens Johnson Syndrome Kids Week. SJS Kids Week, held annually at the end of July, is dedicated to the treatment of complex corneal disease and emotional support of pediatric SJS patients and their families.

Dr. Lynette Johns, O.D., who treats many of BFS’ pediatric SJS patients, was moved by the isolation experienced by these children and envisioned a special week of treatment, care and fellowship. Families stay together in three large homes at the nearby Walker Center and while treatment is the primary goal of the week, it is also filled with fun activities, facilitated conversations and group dinners to create a strong, vibrant and connected community.

And what incredible community has developed – barriers have fallen and friendships have grown. Imagine the joy of parents who had spoken by phone or online for years, embracing each other for the first time. Picture six amazing teenage girls learning that they had many things in common as they shared the intimate details of their lives. See the younger boys running, jumping and playing together with sheer joy.

Particularly powerful were the facilitated conversations – striking because of their truthfulness and honesty. Parents shared their joys and fears, tears and laughter and received loving and thoughtful support from their peers. They talk about the stresses of having a child with SJS and their pride in the strength of their children. SJS survivors and siblings eagerly share their feelings on everything from dating and intimacy to bullying and advocacy.

SJS Kids Week is profoundly meaningful for the staff of Boston Foundation for Sight and for our SJS pediatric patients and families. If you would like to make a donation in support of this amazing event, please click here.