Last month, a mysterious illness suddenly struck 17-year-old Santa Barbara High School student Grace Fisher, paralyzing her entire body. Fisher is the 101st person to be diagnosed with a newly named disease: acute flaccid myelitis (AMF). Since August, 107 children have been diagnosed with the perplexing illness, but doctors are not certain of its agent. A cluster of cases last year led experts to suspect the illness may be linked to enterovirus D68, but the specific cause is still under investigation.
Next week, Fisher will travel by Air Ambulance to Craig Hospital, a rehabilitation hospital in Denver that specializes in treating people with spinal cord injury and traumatic brain injury. “We are going together as a family of four,” said her mom, Debbie Fisher. “We are making it a journey of our own.”
On the Sunday before Christmas, during her belated birthday celebration, Fisher suddenly felt numbness in her hands and a pain in her neck. Her mom told her to lie down and she would feel better soon. Shorty after, she felt numbness in her feet and it became evident she needed to go to the hospital. By the time they got there, her waist had become so numb that Fisher needed a wheelchair to get from the car to the Emergency Room.
Shortly after, Fisher was intubated. The days that followed were filled with confusion and, at times, tremendous sadness. In her hospital room, she communicated with her parents by blinking, letting them know she wanted the lights off, for instance. Her dad read books to her — the first time he’s done so in years.
On January 14, the tubes were removed from her mouth, and she underwent a tracheotomy — an operation to create an opening through her neck into her windpipe — so she could breath without using her nose or mouth. She can communicate by whispering very softly. “I couldn’t understand what she was saying, but her parents could understand every word,” said her high school counselor Ruben Gil when he went to visit her last week. “It moved me.”
After the tracheotomy, she was in a much better place, said family friend Paul Corr. She has limited movement of her neck; beyond that, she is fully paralyzed. Mentally, though, she is alert. “She’s very plugged in and knows what’s going on,” said family friend Paul Corr, who created this PostHope webpage to keep family and friends updated.
On Thursday, she had surgery to remove the feeding tube from her nose. A flexible tube was inserted through her abdominal wall directly into her stomach. Without a long-term observation of others diagnosed with AMF, little is known about the road that lies ahead.
In the past several weeks, cards and notes have flooded her hospital room and posters and pictures are plastered from wall to wall. Fisher is an avid cello and guitar player and had planned to apply to Berklee College of Music. Last week, a few of her friends visited to tell her that her senior classmates voted her “Person Most Likely to Win a Grammy.”
Gil has been in communication with her parents and her classmates, many of whom are very shaken up. He’s been working to transfer Grace’s sister, Emily, to a high school in Denver for the time being. It’s unclear how long the family will stay there — three months, possibly longer. “We have every intention that she will be here for graduation,” Gil added. “Everyone who’s a Don knows the importance of walking down the hill.”
Debbie said Thursday she felt hopeful and optimistic and was looking forward to going to Denver. “She’s in positive spirits,” she said. “She still rolls her eyes like a typical teenager.”
A benefit lunch last weekend raised nearly $35,000 in donations for medical expenses. On February 15, there will be another benefit event at the Blind Tiger from 6-9 p.m.