Patient Stories

Having a child with special needs often makes parents feel as though they are spending their lives driving from one specialist to another, trapped in waiting rooms, and filling out forms. It was no different for John and Amy Thompson. Their son Jake was diagnosed with Rasmussen's syndrome, a brain disorder that causes seizures.

When Jeffery and Rebekah Fish found out that they were going to have a baby, they were understandably thrilled.

"Even before she was born, we sang to the baby," says Jeffery. "We named her ahead of time." They had big dreams for Laura, but they also wanted that most basic of things: a happy, healthy baby girl. That was not to be.

Buenos días. Gracias por llamar al Kennedy Krieger Institute. ¿Cómo le puedo ayudar?

If the line of text above is confusing, imagine living in a world where every word, every conversation is a mystery. Imagine needing services but not being able to access them because you don't speak the language.

Bryan's teachers were at a loss for how to help him when he hid under his desk or back in the cubby area and cried. They knew he had been diagnosed with attention-deficit hyperactivity disorder; dysgraphia, a learning disability that affects writing abilities; and Asperger syndrome, but they didn't know how to deal with those diagnoses or what the best ways to teach him were.

Laurie Blitz began to suspect that something was not quite right with her daughter as early as when she was a toddler. Erin seemed overly hyperactive, moving so much that even simple tasks like changing her diaper became lessons in patience and control. When she was old enough to walk, she would constantly run away, placing herself in danger.

Once a week, 19-year-old Erin Strevig can be found riding horses near her home in Westminster. Born with a rare genetic condition known as Williams syndrome, she has difficulty doing many of the things that typically developing teenagers can do with ease, such as walking and talking.

Last year, 5-year-old Samuel Spring came to Kennedy Krieger Institute for evaluation of autism. The genetic and metabolic tests he was to undergo required giving a blood sample. When the nurse tried to tie the tourniquet around his arm in preparation for the needle stick, Sam began to cry and break away. His behavior made it difficult for the nurse to draw his blood.

Jim Schuyler had a big decision to make last February. Diane Stegman, one of the Program Coordinators for the Therapeutic Family Care program, wanted to know whether he and his wife, Karen, could manage to care for one more child. That day, caseworkers from the Department of Social Services had removed Dante,* a 2-year-old boy with spina bifida, from a home where his needs could not be met.

If you've ever doubted how quickly your life can be turned upside down, just ask the Bahen family. On Monday, Nov. 14, 2000, the Bahens' 5-year-old daughter Nicole joined her friends for her usual afternoon dance class. By Sunday Nov. 20, Nicole lay in intensive care recovering from surgery, unable to speak, roll over or swallow, nearly paralyzed on her right side. Such is the swift devastation of a pediatric brain tumor.

At 5 years old, Tyler Kiskis is a bundle of energy, a little spark-plug with tossled brown hair and an impish grin who revels in the things that most 5-year-old boys do baseball and soccer, chasing the family Labrador, jumping through a water sprinkler in the front yard of his family's Pasadena home.