HALEY SMITH
Rare genetic defect pits family against obstacles
By AIME DUNSTAN
Special to the Palm Beach Post
Elisa and Craig Smith’s house is a happy house, a three-bedroom ranch in suburban Lake Worth filled with music and piles of pretty pink playthings for their three little girls.
“Craig likes to play the bongos,” 4-year-old Chloe says of her stepfather, who’s grooving with 5-month-old baby Kailyn in a rocker near the kitchen table. “I like to play the xylophone.”
Baby Kailyn lets out a giggle and waves a pudgy fist. Mama Elisa is getting ready for dinner, saucepan in one hand and cellphone in the other, stopping to retrieve Piglet the pit bull, who’s made another great escape from the back yard.
Organized chaos, they call it.
But Craig’s daughter Haley, 5, isn’t tumbling or telling stories. She sits in a wheelchair, eyes glazed over, as shapes move on a nearby TV screen. She was born with a rare genetic defect, agenesis of the corpus callosum, which prevents communication between the left and right hemispheres of her brain. She spent her first eight months at Miami Children’s Hospital, where doctors said her life could end at any time. But it didn’t.
As Haley grew, she suffered from chronic pneumonia. Surgery helped, but left her with a feeding tube and a tracheotomy, so fluid could be suctioned from her lungs.
Haley is largely non-communicative, save for the occasional grunt or laugh. She has sleep apnea and requires a ventilator to breathe at night. Her complex medical care requires regular trips to a gastroenterologist, an endocrinologist, a neurologist, a pulmonologist, a pediatrician and a nutritionist, plus monthly trips to the hospital to flush her medication port.
When Haley was 2, her mother left. It was too much. Her father, Craig, a 40-year-old electrician, cared for Haley on his own for nearly a year before meeting Elisa.
“I felt really bad for his situation,” says Elisa, 30. “Chloe was only a year-and-a-half at the time. I figured it was a really good opportunity for Haley to be around a ‘normal’ child, and for Chloe to learn about children with special needs and disabilities.”
She moved to Lake Worth and took over full-time care of Haley. She and Craig were married in August 2008, and baby Kailyn came along the following June.
Medicaid covers most of Haley’s medical expenses, transportation to and from school and in-home nursing. But it is not enough — this fall, Craig was laid off.
Still, the beat goes on.
“We do everything like we’re a team,” says Elisa.
HALEY’S WISH
Craig and Elisa Smith would like 5-year-old Haley to sleep in a bed instead of a crib. This requires a lift system ($2,000) to help her in and out of bed, a tumble mat ($200) to protect her from falls, and computer adaptations ($500). A KidWalk Gait Mobility System ($5,000) would help Haley explore the house independently, and help her learn to walk on her own. The family also needs money to help cover accumulating medical expenses not covered by Medicaid ($4,000), as well as rent and utility bills ($3,000 per month) until Craig can find work.
