The unexpected death of 16-year-old Islander Middle School student, Jim Holt, on Feb. 21 represents an intense personal loss for many people across King County.
The young man with extreme disabilities who could not speak was loved and cherished and celebrated. By all accounts, from school bus drivers to surgeons to school administrators, teachers, parapros and fellow students, Jim was an integral and even an essential part of their daily lives. Each felt a personal connection to Jim and his family.
They referred to themselves as ‘Team Jim.’
Jim had genetic disorder, a trinomial translocation of the lower part of the 16th and 17th chromosomes. Pregnancies that involve defects of the 16th chromosome usually end in miscarriage. As such, a child with the defect is rare. The babies who do make it usually do not live long. The defects cause severe mental and physical retardation and seizures.
For his parents, Kathy Holt and Steve Holt, the fact that their tiny baby boy had extreme medical issues came as a surprise. He arrived on Christmas Day, just two weeks early. But he weighed only four pounds. The doctors at Children’s Hospital told his parents that there was a 90 percent chance that he would not live beyond a year.
After a few days in the hospital, they took him home with their older son, Thomas, and learned how to care for him.
From birth, he required 24-hour care. He could only walk a few steps unassisted. He would not eat by mouth and was instead fed every two hours through a gastrointestinal tube. He had a seizure disorder. He had between 20 and 30 a day — some barely noticeable, but others were grand mal seizures that might last several minutes. He could choke or lose consciousness and might require a 911 call. His lungs were compromised and he often developed pneumonia.
Jim’s mental ability was that of a 10-month-old, his mother said.
He could hear, but it was not certain how much or what he understood from words. He had some vision, but they were not sure how much. But what they were certain about was that he could communicate. He could not speak, but he was vocal, his mother laughed. “He made himself known.”
He found a way to communicate, but he did not cry, his mother said. "But if he heard another child cry, he would get upset."
He did not sleep more than a few hours at night. He would often be up at 1 or 3 a.m. and would remain awake. His mother would get up too, she said. As she worked from home, she used the time to work through the early morning hours.
From the time he was 3 years old, Jim was in special education in the Mercer Island School District. His care and schooling involved dozens of people.
He was not toilet trained. But, like any mother, Holt learned to change his diaper just about anywhere.
But at school, there was a special changing table that can be lowered then lifted. There was other special equipment: a tricycle, a special chair with an attached table.
His father Steve and step-mother Pattie, in Renton, were very involved in Jim’s life. After Jim was born, Steve Holt told his supervisors at Boeing that his focus would be on his family — that he would be available for his son, Jim, whenever he needed to be.
Jim also had two older step-siblings, Kat and Selby, and his grandmother, Dorothy, who doted on him. He was accepted and celebrated by the people at St. Andrews Presbyterian church in Renton.
Students fussed over Jim when he was at Island Park, then when he moved on to middle school, where there was a whole new world to embrace him. Students competed for the chance to be with him.
He was a rock star, his older brother Thomas often said.
There were many hospital stays. Each time, his mother said, there were cards and picture from students at school.
His mother cannot say enough about all of the people who rallied around Jim from the very beginning. There were doctors and nurses, of course, but also neighbors, bus drivers, school staff and fellow students who befriended and protected Jim. They were all a part of ‘Team Jim.’
Holt worried if people would resent Jim because he required so much time and attention.
For the most part, it appears they took it all in stride.
“I cannot say enough about the school district and the people who loved and cared for him,” she said.
He died on the morning of Feb. 21. It was mid-winter break for Mercer Island School District students, and Jim was at home with a caregiver.
It was unexpected.
Jim had gone past the 13-year milestone, his mother said. “He had 10 surgeries, and we thought we were kind of done with the major issues.”
He was prone to having pneumonia or similar crises. But she did not expect this. He had not been ill.
More than 400 Islanders attended the service for Jim at Mercer Island Presbyterian Church on Feb. 26. The service was lead by Rev. Scott Anderson of St. Andrew in Renton.
“I am also a member of ‘Team Jim,’” Rev. Anderson said, adding that Jim was a “gift” to our congregation.
“During services, Jim would sometimes have something to say,” Rev. Anderson said, explaining that he would wait for Jim to finish until to continuing.
“It was hard sometimes to have Jim, but astonishing, at the same time,” he said.
“We needed him as much as he needed us.”
This is the first of three stories about Jim Holt.