NAVIGATION

Redefining Lives Touched by Brain Injury

For 37 weeks, young mom-to-be Jackie Samalis and her husband excitedly awaited the arrival of their first child. Seventeen days past her due date, 10-pound William Samalis arrived, marking the beginning of a courageous journey that would go on to redefine the word “miracle” for this family.

William was born with a congenital defect known as a diaphragmatic hernia. Because of the hernia, William also had dextrocardia, or organ reversal. His heart was situated on the right side of the chest instead of the left. In its place was his tiny intestine, with one lung that was only a quarter the size of what it should have been.

The good news was that William’s conditions could be corrected with surgery – if successful. “With only a 50 percent survival rate, the odds were not comforting,” Jackie remembers. “But we were obviously committed to doing everything humanly possible to give him the future we had always dreamed of giving him.”

The surgery was a success. Weary, but infinitely grateful, William’s parents began to put aside the emotional turmoil of William’s first days and allowed themselves to revel in the joys of watching William develop. Their relief was short-lived, however, as they began to observe subtle differences in the way the left side of his body was responding, or not responding. Tests would reveal that William had suffered a stroke at four months of life, leaving him with a brain injury diagnosis. His would be a complicated childhood.

After nine years of treatment and rehabilitation in a variety of school and clinical settings, it was clear that William needed more intensive support. At age 9, the family’s journey led them to the May Center for Education and Neurorehabilitation in Brockton, Mass. The school is one of the few programs in the country that exclusively serve children and adolescents with traumatic and non-traumatic brain injury.

“As William got older, it became very clear to us through his interactions at school and with his siblings at home, that he absolutely needed more specialized care,” Jackie says. “I remember walking into the classrooms at the May Center and seeing William in the faces of the students I met. This was a place that would understand my son and give him the kind of care he so desperately needed. I knew without a doubt that this was a place where our son was going to be successful.”

“When William joined our school, he was struggling with the challenges that are typically present in individuals who have experienced a stroke,” remembers Andrea Potoczny-Gray, Director of the May Center. “Due to his weakness on the left side, day-to-day tasks were very challenging for him. He was also experiencing a high level of discomfort and anxiety in social situations and in his interactions with others.”

Today, after intensive occupational and physical therapy, and a highly specialized educational program, 17-year-old William has made tremendous progress. He has worked hard on his social skills and is no longer withdrawn. He has reached many milestones involving his willingness to participate in recreational and physical activities with his peers, academics, and personal growth.

As the cashier for the school store, William gets many opportunities to further strengthen his social, academic, and vocational skills. One day, with the help of a job coach, he hopes to take on the responsibilities of a part-time job in the community.

One of the most difficult and emotional decisions for Jackie was his enrollment in the May Center’s residential program in 2009. It ended up being a powerful contributor to William’s growth and well-being. “It was a very, very difficult choice to make,” she remembers. “Every parent dreads the day when their child leaves home for whatever reason. But in some ways, I felt like I was failing my son. In the end, the residential program at the May Center has been a tremendous gift to William.”

Jackie acknowledges that living at home was sometimes not easy for William or his siblings. “But now, William is genuinely happy living with his friends and classmates,” she says. “The tantrums have decreased significantly. He is going to dances and parties. He is performing well academically. He has a wonderful sense of humor and he is developing a rapport with others. And, most importantly, when he comes home on the weekends, we can be a family again.”

Inspired by her son’s journey, Jackie (who has two other children, one of whom has special needs) went back to school to earn a bachelor’s in psychology and special education as well as a master’s degree in special education/severe disabilities, with licensure in severe special education programs. She is now teaching, bringing hope to other families, and watching a future unfold for her son who has come such a long way.

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