Staff
Jacob Kennedy, 11, had the misfortune to suffer the rare Guillain-Barré syndrome twice, but it’s not cause for sadness. It’s cause for joy.
The family is not in need financially, said his mother Jennifer Kennedy. “The Lord has been caring for our financial needs through our church, family and friends.”
Their goal in sharing his story is not really to raise awareness about the rare disease or to seek financial help.
Rather, Kennedy said, she wants to tell how people in Sweet Home and surrounding communities are so supportive when they see a need – and to say thank you for the many prayers said on Jacob’s behalf – and, I admit it, to request more prayers. It happened to Jacob, and through it, people have come together and been an amazing encouragement and support to us.”
She also wanted to avoid instilling fear in anyone, she said. “It is a really, really rare disease.”
The disease is a rare disorder in which the body’s immune system attacks the nerves. Weakness and tingling in the extremities are usually the first symptom. Those sensations can quickly spread, eventually temporarily paralyzing the whole body. Recovery may take months. Little is known about the cause.
The family normally enjoys leading the quiet life, and she wrestled about whether to tell the story, Kennedy said, “But the Sunday School song that our kids sing kept coming to mind. ‘This little light of mine … Hide it under a bushel, no!’”
The first time Jacob suffered from the illness, his Cub Scouts troop took care of the family’s yard, Kennedy said. Their troop leader stocked the Kennedy fridge when they came home.
“Those are just two of many, many things that happened,” she said. “This time, our church, River of Life Fellowship, has supported us immensely. God’s people are amazing. Being a part of a small town really has its advantages.
“I think most every church in town has prayed for Jacob, and our family is so blessed. Thank you, Sweet Home. God brings good out of trials, and I would hope that sharing Jacob’s story would be an encouragement to others.”
In July 2011, Jacob was 7 when strange things started happening to him. His hands weren’t working right. When his mother took him to the doctor, he couldn’t grip the lock to unlock the door of his dad’s (Joe Kennedy) truck.
The doctors sent him home, suggesting it might be side effects from a concussion after hitting his head a couple of days earlier. After returning home, he went outside to play with his sister – he has two sisters, Katelyn, 7, and Annie, 13.
When Jacob started falling down and was unable to walk correctly, his mother took him right back to the doctor, who called the doctors at Doernbecher Children’s Hospital. They agreed to accept him as a patient.
Everything hurt throughout the night as doctors kept coming in and out of his room, and no one knew what was wrong with him. By morning, he was having trouble swallowing. The doctors put in a breathing tube, which he had for 13 days. He also battled aspiration pneumonia during that time.
Later, Jacob was transferred to Randall Children’s Hospital, where he had to do rehab. Within two weeks, he was able to move from a wheelchair to a walker and then to a cane. He had to take special nerve medicine for a while and go to physical therapy in Albany.
Guillain-Barre syndrome re-occurs in up to 3 percent of patients, but no one thought much about it until Kennedy woke up on his mother’s birthday, March 26, and his legs hurt. She figured his muscles were probably just sore, but later in the day, she noticed Jacob limping. His feet hurt, and his fingers and feet were tingling.
Family members recalled how he had similar symptoms four years earlier, and Jacob’s grandmother suggested his mother take him to the hospital in the morning if the symptoms continued. The family sent a prayer request to their church, prayed and turned in for the night, although no one really slept.
By 2:30 a.m., Jacob was having trouble walking, and his mother and grandmother took him to the hospital – rolling him into the emergency room in a wheelchair. Learning about his history, doctors contacted Doernbecher immediately. He stayed in Portland hospitals for over a month.
“We came home on Wednesday (May 6),” Kennedy said. “He went up there on March 27.”
After leaving the intensive care unit, Jacob transferred to Randall Children’s Hospital.
“After you leave Doernbecher, it’s fun,” Jacob said, as upbeat as his mother.
“People make the world go around,” Kennedy said. “It makes you feel good.”
Wherever she would go, people would ask about her son, she said. They’d let her know they were praying for him. In one case, one person was playfully upset because someone else got to the Kennedy lawn faster and mowed it.
“It just means so much to me.” Kennedy said.
Jacob is getting better, but he continues in physical therapy and occupational therapy, which focuses on fine motor skills.
He said “it feels good” to know so many people were praying and helping.
With everyone who stepped up, the experience wasn’t a big problem, Kennedy said. “The Lord never left. Our friends were there for us. Our family stepped up. Without them, it would’ve been awful. I can’t imagine not having the support of family and friends and the community. I wouldn’t have felt hopeless because we have the Lord.
“Our church sent us cards the whole time we were up there. We never had to worry about what we were going to eat. There was cash, and it was just what we needed.”