Linda Jackson had seen pictures of the disease, and the images scared her.
Children born with harlequin ichthyosis were covered with patchy, peeling red skin; their mouths pulled open in tight, permanent grimaces.
A 56-year-old single mother who had never taken in a foster child, Jackson wondered if she had made a mistake in agreeing to meet a baby born with the rare skin disorder.
But last September, when nurses in the residential center at the Children’s Place Association on Chicago’s West Side led her to the 10-month-old boy sitting in a stroller, she saw his brown, searching eyes and locks of dark, curly hair and was smitten.
“I wasn’t afraid of him,” Jackson said. “(He) is the kind of kid that will take your heart and mind at the same time.”
The affectionate boy Jackson now calls “Jojo” is among hundreds of ill and disabled children in the state child-welfare system who live with nonrelated foster parents. With special needs ranging from mild speech impediments to Down syndrome, these children make up about 20 percent of the roughly 15,000 children in foster care.
In the past, children with severe disabilities were usually sent to nursing homes or other facilities. But in the last 10 years, the Illinois Department of Children and Family Services has tried to reduce the number of children in foster care and find long-term homes for those who are disabled. At the same time, technological advances have made it easier to manage medical problems at home.
But finding foster parents willing to take in these children is still a challenge. That day in September, caseworkers told Jackson she could take some time to decide.
“I said, ‘No, I don’t have to think about it,'” she recalled. “‘I’ll take him.'”
Shortly after his birth in December 2008, Jojo, who is not being identified because he is a ward of the state, was diagnosed with a rare genetic disorder that causes his skin cells to multiply at a rate several times faster than average. Children with the condition are at risk for infection and dehydration, and suffer various developmental delays and complications. Experts say there are only 14 other known cases of harlequin ichthyosis in children in the United States. Children with the disorder often died shortly after birth, but medical advances are improving their chances, experts say.
To save the infant’s life, doctors quickly prescribed an intensive routine. He would need Vaseline rubbed all over his body every few hours to keep his skin from cracking. He required eyedrops every two hours because his eyes couldn’t blink, and two baths a day to ward off infection, said Dr. Richard David, one of Jojo’s doctors at Stroger Hospital.
Jojo responded well to his care. “He acted like a baby,” David said. “He would look at you. He would cry if you weren’t playing with him and talking to him.”
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After four months, doctors sent him home with his parents, Mexican immigrants who primarily spoke Spanish. But less than two weeks later, his parents brought him back to the hospital, according to state records, describing themselves as “overwhelmed” and “unable to adequately care for” the child.
The parents left and did not return for their son, according to records and hospital staff. The boy’s 30-year-old father, a construction worker, told the Tribune he had felt pressured by the hospital to take home a child he felt unable to care for. At-home nurses seemed afraid to touch his son, and they didn’t work enough hours, he said. Also, the boy’s mother had suffered a foot injury that left her unable to help, he said.
“It’s not that I don’t want him. I can’t give him the care he needs,” he said in Spanish. “I don’t want to put his life at risk.”
DCFS took custody and moved the boy to the children’s facility. Despite doctors’ efforts, they worried that Jojo’s life lacked one crucial element:
“What he needed was a mom,” David said.
But David, who knew the demands of the care Jojo required, had doubts about DCFS finding someone up to the task.
“They miraculously turned out this lady,” he said. “I was definitely surprised.”
Jackson’s definition of parenthood was influenced by her mother, who had taken in a 5-day-old infant as a foster child after Jackson, who grew up in Memphis, left for college.
As an adult, Jackson worked in manufacturing plants while raising an autistic son as a single parent.
But the idea of fostering a child stayed with her. With Jackson’s advocacy, her son, Korey, 20, had graduated from high school with a 3.2 grade-point average. If she could help her son defy expectations, she thought, why not try to do the same for another child?
She began taking foster parenting classes in 2008 and, a year later, was introduced to Jojo.
Last October, six weeks after meeting the child, Jackson took him into her East Garfield Park home. She and her son, who lives with her, rearranged their lives to welcome the boy. A crib went in the spare room, a playpen full of Spanish-language books in the living room. Jackson, who had been laid off from her job as a manufacturing supervisor, decided not to return to work.
With 16-hour-a-day nursing help, Jackson established the routine suggested by doctors. But just as Jackson was getting a handle on one medical crisis, she faced another. In November, just weeks after Jojo’s arrival, Jackson learned she had breast cancer and underwent a mastectomy.
Relatives and nurses stepped in to help, and Jackson slowly recovered. Caring for Jojo provided a welcome distraction, she said.
“I didn’t have time to think about, ‘poor me,'” she said.
On a recent afternoon, Jackson pulled Jojo onto her lap, soothing the restless boy as he babbled. She tickled him until they both laughed.
DCFS officials provide Jackson with the nursing assistance and about $74 a day in foster care payments. The state also subsidizes his many therapy appointments.
Emotional and practical support comes from a lifeline arranged by Stroger Hospital staff. They put Jackson in touch with Annamarie Gonzalez, a California woman whose 24-year-old son is believed to be the oldest living survivor of harlequin ichthyosis in the United States.
In telephone calls, Gonzalez shares what she has learned.
“People are just going to be looking. They’re not going to take the chance to get past the exterior,” Gonzalez said. “But she loves him. And it’s going to get easier.”
Doctors believe that if Jojo continues to ward off infection and undergo developmental therapy, he may achieve some typical milestones of childhood: attending school, riding a bike. While he will always face medical challenges, he’s already meeting some benchmarks.
Jojo, now 19 months, has learned to walk and feed himself table food with a spoon. Jackson, who hopes to eventually adopt Jojo, said he’s also beginning to talk.
She’s taught him to say “Mama.”
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