Izel Jacobo loves algebra and science, sings in her fifth-grade choir, and dreams of becoming a math teacher. She helps her mom cook dinner, cleans the living room couches with her dad, and joins her two brothers in baseball and basketball games at their home in Santa Ana, California.
She also uses a wheelchair to get around, requires help bathing and dressing and needs regular medical attention, because spina bifida is a congenital spinal disorder and has left her paralyzed from the waist down since birth.
Amid this interplay of achievements and challenges, Izel remains a confident, exuberant 10-year-old who views the world with a twinkle of mischief in her eye.
"She is like a bubble of joy," says Karla Banos, leader of the Santa Ana chapter of Winners on Wheels, a nationwide club for people who use wheelchairs of which Izel is a member. "I just believe that for her, everything is possible. There are no limitations."
A Mother's Fears
Spina bifida is a spinal disorder in which a fetus' spinal cord fails to close properly, damaging the exposed nerves, according to the National Institutes of Health. Children born with this disorder may have paralysis of their lower limbs, learning disabilities, bowel and bladder complications, and fluid accumulation on the brain.
Some patients experience only mild disability, while others are so severely affected that their spinal cords protrude from their spines. Uncertain how the disease would affect Izel, her mother, Maria Ascencio, 30, was gripped by anxiety before Izel's birth.
After she was born, "I felt like the only person with a child with spina bifida," Ascensio says.
Doctors had warned her of the worst: Her baby could be born with a swollen head or severe mental retardation. Ascensio was delighted to have an active, lively daughter instead.
"She has a very normal life," Ascencio says. "She doesn't walk, but she has a good mind."
Izel is an enthusiastic member of her fifth-grade classroom, joining other students in choir, debates and field trips, says her teacher, Ana Filipek, at Carl Harvey Elementary School in Santa Ana. While her classmates run laps during physical education class, Izel wheels around the track and practices upper-body stretches.
"One of the things I'm most excited about with Izel is her enthusiasm and her joy for learning," Filipek says. "She's very much a take-charge and let's-get-this-done and what-can-I-learn kind of kid."
Izel plays and studies easily with the other kids, joining them in schoolwork and classroom banter, Filipek says. When she needs a hand reaching her backpack behind her wheelchair, someone is always ready to help.
"For most of us who do have working legs, we have to be aware of things we can do to make it easier for her," Filipek says. "I think we're willing to do that."
A Girl Full of Confidence
Izel's rapport with her classmates may spring from her confidence in herself. When other kids ask about her disability, she says, "I just talk normally to them. Sometimes they ask me how I feel in a wheelchair, and I say, I feel fine."
If another kid picks on her, Izel says, she doesn't hesitate to stick up for herself.
"I get mad at them," she says. "I tell the teacher, and ask `Why are they getting mad at me when I'm in a wheelchair Then they apologize to me."
Although she thrives in school, Izel struggles with subjects like reading. It's unclear if that's because of her spina bifida, or because she's a bilingual student whose native language is Spanish, Filipek says.
Ascencio expects all three of her children to meet high standards of acacemics and discipline, so when it comes to schoolwork, Ascencio doesn't cut Izel any slack.
"I insist that she spend three hours [a day] reading, reading, reading," Ascencio says. "I've been very demanding of her."
For Ascencio, life revolves around Izel. Her husband, Cesar, works two jobs so she can devote herself full time to her daughter, she says. She brings Izel everywhere: on family outings, to Disneyland and to birthday parties.
"The whole family goes out together," Ascencio says. "I treat her normally. I treat her just like her brothers."
Izel helps chop onions and set the table while her mother prepares dinner, always volunteering to help, Ascencio says. When her brothers play basketball, Izel shoots hoops along with them. During their neighborhood baseball games, she takes a turn at bat.
"They pitch and I hit the ball and make a home run," she boasts.
An Older Brother's Wisdom
Her older brother, Francisco, 12, is reflective and earnest as he offers guidelines for other families of children with disabilities.
"Be patient with them and treat them the same as others, like regular kids," he advises. "Don't treat them different. Let them try to do what they want. If she wants to work on the computer or jump on the bed, I let her. Or if she wants to play baseball, let her swing the bat. Let her try whatever she wants to do to see if she's good at it."
Izel's younger brother, Cesar, 8, just flashes an impish grin when asked how he treats his sister. He and Izel often bicker and tease each other, she confides. "I'm the only girl in the family," Izel explains.
Helping Izel come to terms with her disability has sometimes been painful for Ascencio.
"She asks, Why can't I walk? Why can't I ride a bike? Why can't I roller-skate? Why aren't I growing?" Ascencio says. "I told her, God says you can't do these things, but there are other things you can do."
Perhaps the darkest times followed the deaths of two of Izel's friends in recent years, both children with spina bifida. One died from an asthma attack, while the other suffered fatal complications during a corrective surgery. Izel grieved their deaths and feared for her own life.
"I missed them a lot," she says. "I always think about them and pray for them."
After her friends deaths, Izel resisted future surgeries, but eventually relied on prayer and pluck to get through them, Ascencio says.
Her toughness was apparent after a weeklong hospitalization for a brain infection. Although Ascencio worried about her daughter's recovery, Izel emerged grinning and eager to go home.
"When I got out of the hospital, [my family] had a surprise party for me," she says. Joyful to be home again, she spun in her wheelchair until she grew dizzy.
"I was dancing with my brothers. I was so happy."
Posted 2001.
Deborah Sullivan Brennan is an Idyllwild, California-based writer specializing in health and environmental issues. She is a regular contributor to the Los Angeles Times and to several health Web sites, including Apria.com.
