SJS Kids Week: Memories to Last a Lifetime
Meet Julie and Stephanie; Maria and Ndeye; Kephart and Jesse; Kayla and Karyl; Ian and Shane; Isaac and Zachary; Qar-Zma and Sarah; 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, New York, Illinois, Washington, Texas, Mexico, Canada and Africa. They have parents 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.
In 2010, these survivors and their families came to Boston Foundation for Sight (BFS) in Needham, Massachusetts for a unique event - Stevens Johnson Syndrome Kids Week. SJS Kids Week, held at the end of July, was dedicated to the treatment of complex corneal disease and emotional support of pediatric SJS patients and their families. The second SJS Kids Week was held July 29 - August 5, 2011.
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. “… they are often normal kids again in every way except in regard to the eyes,” says BFS treatment partner, Dr. Kimberly Sippel, M.D., assistant attending ophthalmologist, New York Presbyterian Hospital, New York and assistant professor of ophthalmology, Weill-Cornell Medical College, NY. In the visual rehabilitation stage, “the key is to mimic in some way the normal functions of the ocular surface.” (ASCRS Eyeworld)
Since 1992, Boston Foundation for Sight has worked with SJS/TENS patients to provide them with a long term treatment solution: prosthetic replacement of the ocular surface ecosystem (PROSE). PROSE is a pioneering treatment model to restore vision, support healing, reduce symptoms and improve the quality of life for patient suffering with complex corneal disease. PROSE rehabilitation uses FDA-approved custom-designed and fabricated prosthetic devices to replace or augment the impaired ocular surface ecosystem. For many thousands of patients with conditions like Stevens-Johnson syndrome and TENS, PROSE can be the ideal, and sometimes the only treatment capable of restoring vision and dramatically reducing pain and light sensitivity.
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. Beth Beard, Director of Communications and Community Networks and Tara Stepanian, Annual Giving and Events Manager at BFS took the inspiration of Dr. John’s vision and collaborated to create BFS’ first ever pediatric outreach event by– SJS Kids’ Week – where SJS kids could meet their peers and a source of information and sharing for parents.
Families stayed together in two large homes at the nearby Walker Center and while treatment was the primary goal of the week, it was also filled with activities, facilitated conversations and group dinners with the hope that the week would create a strong, vibrant and connected community.
And what incredible community developed out of the week – barriers fell and friendships grew. Witness the joy of parents who had spoken by phone or online for years but now embraced each other for the first time. Watch 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 each parent received loving and thoughtful support from their peers. They talked about the stresses of having a child with SJS and their pride in the strength of their children. In their meetings, the children also shared their feelings on a wide range of topics – from dating and intimacy to bullying and becoming an advocate to help educate the world about SJS.
It was a profoundly meaningful week for the staff of the Boston Foundation for Sight and our SJS families, and BFS has made the commitment to make this an annual outreach event. If you would like to make a donation in support of SJS Kids Week 2011, please click here.
