Other Voices

Will Gibney, at 17, has written a book about the dog that changed his life.

“Toshi is my service dog,” says Will in this week’s Enterprise podcast. “He means so much to me because for years he’s been by my side.”

Once Will, at age 12, was matched with Toshi, he began to produce the antibodies he needed to fight infections.

“Toshi has been life-changing for me,” says Will, explaining why he wanted to write the book. He wants other people with disabilities, who may be scared of being ridiculed and judged, to know they can get service dogs to help them. 

In the introduction to the book, Will’s mother, child psychologist Laura Assaf, writes, “Will became more independent and mature as he started caring for another being instead of needing everyone else to care for him. The character gifts Will has — his kindness, perseverance, generosity of spirit, and empathy for others — were no longer overshadowed by the incongruent behaviors he demonstrated when his brain was inflamed.”

Will has a condition known as PANS, from which Assaf said one in 200 children may have flare-ups although the syndrome is often misunderstood and misdiagnosed. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome.

Will is also immunodeficient, which fewer than 20 percent of children with PANS are, his mother said.

Assaf called it a “double whammy” since her son’s body was unable to produce the antibodies needed to fight infections so he spent lots of time getting infusions to try to build a healthier body. He also underwent seven years of long-term suppression therapy on antibiotics, probiotics, and medications to treat symptoms.

“When there’s inflammation in the body and there’s inflammation in the brain, then we get behaviors” that can often look psychiatric, leading to frequent misdiagnoses of the condition, Assaf said.

When Will’s condition was misdiagnosed by local doctors, his parents pushed to find national experts who understood the condition. Some children with PANS can be treated with a 30-day antibiotic instead of six years on an antidepressant, said Assaf. “It sends them down a very scary and dangerous path,” she said of misdiagnosis.

Will’s book, “My Boy, Will,” captures his five years with Toshi in a narrative written for children illustrated with simple expressive artwork created by Will.

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