AMY SULLIVAN
Girl contracted encephalitis at one month old
Suzy Sullivan attends school with her daughter Amy to monitor seizures and hypothermia episodes. Amy contracted encephalitis when she was one month old.
By LESLIE GRAY STREETER
Palm Beach Post Staff Writer
Susie Sullivan knows daughter Amy’s every laugh, her every smile. But some mysteries Amy’s sweet face holds are frustratingly elusive.
“I just want her to be able to tell me when she’s hungry, when she hurts,” Sullivan says, wiping away tears. “I realized the other night — that child does not cry wet tears. She laughs. But she never, never cries. I cry enough for both of us.”
In the first month of her seven years on this earth, Amy contracted encephalitis, an infection that left the previously healthy baby’s brain severely damaged. She cannot speak, feed herself, or go to the bathroom by herself.
For a while things got better. With the help of her physical therapists and teachers at Potentials Charter School, on the campus of the Arc of Palm Beach County, she flourished to the point where she was able to take a few wobbly but determined steps.
“She’d take off across the room,” her mother remembers.
Amy is kept warm during a hypothermia episode while at school.
But now, a series of seizures that wrack her tiny body sometimes up to 200 times a day leave her confined to her wheelchair. And though her mother can comfort her, there is little she can do to stop them.
“She’s developed a resistance to the medication,” says Sullivan, who suffers from health issues of her own, having had three gastrointestinal surgeries.
In March, things got even worse, when Amy was taken by helicopter to Miami Children’s Hospital to treat hypothermia, a drop in her body temperature and heart rate to life-threatening levels. These episodes now happen daily.
The costs of her extensive medical bills are added to her family’s other struggles: Father Christopher lost his landscaping job. Susie spends every day that Amy is well enough to attend school volunteering there. And 15-year-old brother Grant, who has ADHD, also requires a lot of energy.
“I’m so tired,” Susie says, not for the first time.
Physical therapist Mary Pengelley says that’s because the Sullivans work so hard. “They’ve faced a series of unbelievably unfortunate events, but they don’t give up in the face of it,” she says. “For every trial, every trauma, they regroup.”
AMY’S WISH
Amy’s father, who lost his longtime job and only recently found a new one, and her mother, who has had three gastrointestinal surgeries, are struggling with crushing medical bills (just one of Amy’s medications costs $2,000 a month) as well as household costs. The family needs a disabled-accessible van, a portable Hoyer Lift with Cradle Sling, a Pediatric Bath Trax Transfer Bathing System, a Snug Seat Pilot adaptive car seat, a Convaid Cruiser adaptive stroller, a custom wheelchair and ankle-foot and trunk orthosis. A touch-screen computer or an iPad would allow Amy to communicate with her parents via special apps.
NOMINATED BY: The Arc of Palm Beach County
