Reaching out for help

Deepa Bharath

Leilani Gutierrez smiles a lot.

That’s probably because it’s one of the very few physical things

she can do.

A car crash three years ago left the Costa Mesa girl, now 6,

paralyzed from the neck down. Leilani suffered serious chest and head

injuries on Mother’s Day 2002, when a car ran a red light, hitting

her mother’s Ford Explorer.

Leilani and her mother, June Gutierrez, were coming home from

South Coast Plaza. The car rolled, ejecting the little girl from her

car seat, where her mother had fastened her.

Gutierrez still remembers the fateful day.

“I saw my daughter dead,” she said, with an expression of stoicism

clouding her face. “She had no heartbeat. She wasn’t breathing.”

Leilani lay in a coma, but woke up a month later after going

through a life-saving surgery at Children’s Hospital of Orange

County, Gutierrez said.

The only part of her body Leilani can move is her face. Gutierrez

says she is thankful for that.

“I can still hear her speak,” she said. “I can see her beautiful

smile. She’s alive and she’s here.”

On Oct. 10, family, friends and community members will participate

in the third annual Walk for Leilani, an event that raises money for

her treatment, equipment and therapy.

The biggest struggle the family has had to go through is

financial, Gutierrez said.

“It makes me sick to think about the amount of money that goes

into taking care of a disabled person,” she said.

To make matters worse, Gutierrez herself was diagnosed with

multiple sclerosis, a disease that affects the brain and spinal cord,

in January.

“It paralyzed the right side of my face and my right arm,” she

said. “But I’m OK now. It’s affected my vision too. But it’s just

something else to deal with.”

Gutierrez says her first priority is her daughter.

“When you’re a mom your child is all you think about,” she said.

“You tell the doctor to give you medicine or whatever and send you

home, because you have to take care of your child.”

Leilani is a first-grader at Newport Heights Elementary School.

She sits on a $42,500 wheelchair, which was a gift to her and her

family. The chair accommodates her ventilator, oxygen cylinder,

humidifier and other emergency needs. A black headband keeps her head

in place.

Leilani participates in all class activities, said her teacher

Julie Anne Sommers. On Friday, her friends were singing a song about

numbers and Leilani joined in. She knew her numbers well.

Cindy Hickman-Anaya is her aide in school.

“I’m pretty much her hands,” she said. “She gives me very specific

instructions and I do it.”

Hickman-Anaya was playing a number game with cards and little lady

bug toys. The cards had numbers on them from one to 10 and Leilani

instructed her aide how many bugs to put on each card.

“One, two, three, four ... one more ... five,” she said, as her

aide carried out the orders.

Hickman-Anaya also does art for Leilani.

“She tells me what colors and where they go,” she said. “It’s all

her ideas.”

Chelli Ranstead is the nurse who takes care of Leilani during the

day. She stays right next to her in school.

During recess Leilani says she enjoys playing with friends.

“I play hide-and-seek,” she said, with a smile.

Leilani has accepted her condition remarkably well, her mother

said.

“I’m amazed at how well she has taken it,” Gutierrez said.

“Sometimes, she even puts things in perspective for me.”

Leilani would move her jaw and nose while telling her mom: “Look!

I can move my head!”

“Of course, we know she can’t move her head,” Gutierrez said. “But

her saying that made me happy. Just seeing her happy brightened up my

day.”

But she does have her bad days as well.

“She’s 6 years old,” Gutierrez said. “She gets frustrated

sometimes that she can’t do things like other kids. She wants to be

normal. Some days she’ll say: ‘I hate my body.’ She’ll have

involuntary movements or spasms. It’s just embarrassing for her,

sometimes. Other times, she is in physical pain.”

Physical therapy has worked wonders for Leilani, but even that

doesn’t go smoothly, with insurance refusing to pay for it, Gutierrez

said.

“They suddenly stopped covering it,” she said. “But I fought for

it and got them to cover it again. We saw that Leilani was getting

sick often when she didn’t get her exercise. The movement improved

her circulation.”

The constant struggle leaves Gutierrez exhausted.

Recently, she bought a bicycle for Leilani, which is basically a

tricycle that needs to be pushed from behind.

“She rode it to school last week,” Gutierrez said. “She was so

thrilled about it. It was great.”

That cycle, again, cost $3,000, she said. It’s a lot of money for

a single parent who doesn’t work, said Gutierrez.

“Every time I thought about going back to work, something

happened,” she said. “Leilani ended up going to the hospital. Taking

care of her is a full-time job for me, and right now I can’t even

think about doing anything else.”

Leilani’s father, Rodney Sellars, and Gutierrez are not together.

But he is very much involved in her life, Gutierrez said.

“He sees her several times during the week and weekend,” she said.

Leilani and her mother appear in a commercial for Proposition 71,

in favor of stem cell research.

“We absolutely support it,” Gutierrez said. “Because it’s the only

hope for a cure for Leilani.”