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SAN GABRIEL VALLEY / COVER STORY : MOTHER MARIA’S DAILY MIRACLE : Caring for 6 Children, 3 of Them Disabled, Is a Big Task but One She Does With a Smile

SPECIAL TO THE TIMES

After gently bathing her two young daughters, Maria Romero lays them both on the bed they share, wraps their little bodies in fluffy towels and begins to comb out their black, shiny hair.

The 42-year-old mother of six braids the girls’ hair into precise plaits, laughing while tickling Milagros, 5, and Guadalupe, 3. She’s gotten this process of bathing, dressing and grooming both girls down to 30 minutes, she says with a smile.

She hoists up Milagros--the “miracle"--and straps her into a tiny wheelchair with a pink “Little Mermaid” backpack. Her younger daughter goes in an even smaller wheelchair.

In the kitchen, each girl must be fed by hand; then Maria brings out cups of milk mixed with dried baby food and carefully sets up tubes and syringes to let the liquid drip down their throats.

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While his sisters are being fed, Manuel, 17, the eldest Romero child, sits in his wheelchair at the kitchen table silently playing solitaire on his computer. Maria will feed him later, laying him flat on his back, inserting a plastic tube into his mouth and monitoring the blended food, making sure it doesn’t go into his lungs.

Tending to six children would be a tiring task under any circumstances, but when three of them are severely disabled, the job becomes monumental. Maria Romero wakes close to dawn each morning and doesn’t get to bed until close to 11 p.m., while her husband, Jose, 39, works long hours as a truck driver.

Normally simple tasks, such as dressing and bathing children, become demanding chores when those children cannot step into pants or sit up in the tub. Feedings require scrupulous attention when a slight error could mean choking. Many times, taking a short trip has meant that Maria must hoist a 200-pound wheelchair into a van.

Yet, armed only with an elementary school education and with her abiding love for her children, Maria not only does these things, but does them cheerfully and with meticulous care.

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Maria “is one of the most wonderful mothers I have ever met,” said Dr. Irene Gilgoff, the children’s physician. “These children all have swallowing problems. None has ever been ill. She feeds them with the most loving care. I’ve never met a mother quite like her. She’s absolutely wonderful. She always has a smile.”

Manuel, Milagros and Guadalupe are afflicted with congenital myopathy, a rare, genetic form of muscular dystrophy that confines them to wheelchairs. The Romeros’ other children, Gerardo, 13, Jose Jr., 11, and Daniel, 6, are completely healthy.

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Children affected by congenital myopathies are born very weak, Gilgoff said. They are often unable to swallow or to eat effectively. The disease is not progressive, Gilgoff said; the children’s disabilities will not worsen and they have a normal life expectancy. Nor is their intellect or development affected, and Manuel has proven himself a sharp student.

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Manuel, who is weaker than his sisters, is especially at risk for pneumonia. Still, he has never been sick because of his parents’ conscientious care, the pediatrician said.

In the living room of the family’s modest three-bedroom home on Elliot Avenue in El Monte, photographs of the six Romero children line the walls. In the corner stands a glass case full of trophies, testimony to the younger boys’ sports talent.

Daniel, Jose Jr. and especially Gerardo help their mother by baby-sitting or feeding their sisters. Just playing with them is enough to give Maria a break.

“It’s hard sometimes but it doesn’t bother me,” said Gerardo, an avid baseball and football player. “We have to do our best. There’s nothing else we can do.”

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Finances make the situation more difficult. Although the family has medical insurance through Jose’s $11.30-an-hour job, his plan does not cover many expenses. Like the children’s feeding tubes and syringes. The tubes cost $2 each; the syringes $5 each, Maria said. The tubes and syringes are supposed to be used once and then thrown away; Maria washes the plastic instruments out with hot water and uses them repeatedly.

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Maria and Jose often have had to deny their other children the things they want. Gerard, Jose Jr. and Daniel have asked for expensive cereals or Reeboks, but they get the cheaper brands. “Sometimes they mind,” she said. “They ask, ‘Why? Why?’ and I tell them because it’s the only thing we can afford.”

Jose owns his own home and two small houses that sit on the same lot. One of Maria’s six sisters lives in the front house and helps Maria take care of the children.

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“It’s hard but she’s always happy,” said the sister, Antonia Abarca. “She never gets sad.”

Manuel and the girls share a room in the family’s cluttered but clean house. The three boys share another room, Jose and Maria the third. On Manuel’s side of the room, a Cindy Crawford poster, a Frederick’s of Hollywood lingerie calendar and a poster of a white sports car are pasted to the walls. Numerous religious objects--crucifixes, rosary beads and pictures of saints--are attached to the white walls.

The family receives aid from the state Department of Rehabilitation and California Children’s Services, a state-run organization that provides assistance in obtaining equipment. Still, it’s tough. With six children to feed, Maria spends from $110 to $120 a week on groceries.

“We don’t go anyplace. We just stay home,” Maria said. “Sometimes we go to the park.”

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When the family does venture out to the park, other children stare at the procession of wheelchairs. “They say, ‘Look. Look,’ ” Maria said. “But I just ask them if they want to play with my girls.” The Romeros also often go to relatives’ homes for parties. “All my family knows I’m happy with (my children),” Maria said.

Jose recently saved enough money to buy a $17,000 van. In July, the family received an electric wheelchair lift, worth about $4,500. The lift was donated to the family through the efforts of El Monte Police Officer Don Johnston, who became a paraplegic after being shot in the line of duty in 1990.

Johnston, a helicopter spotter for the police department, had been featured in an advertising campaign for Ricon Corp., a Pacoima-based manufacturer of wheelchair lifts, called “Everyday Heroes.” The company gave him a lift because of his participation in the campaign, but he already had one and rather than accept the new one or ask for something else, he chose to donate it to a family in need.

The Romeros certainly qualified. Maria was lifting the kids and their wheelchairs into their old van; Manuel’s electric wheelchair alone weighs about 200 pounds.

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Johnston found out about the Romero family because he is the “Adopt-a-Cop” for Byron E. Thompson School for the Orthopedically Handicapped, the school that Guadalupe and Milagros attend. The school serves students ages 3 to 15 who have special needs from 15 school districts, said principal Frank Greenwood.

Manuel attended Thompson School until he was 15. He then went to Bassett High School in La Puente, where he graduated with honors in June. Next week, Manuel will begin attending Cal State Fullerton on a full scholarship. He will study computer science. The family is working on getting Manuel transportation to the university and once at the school he will have a full-time attendant to help him in his classes.

Students at Thompson School are noted for their musical group, the Handbell Choir. When he was a student at the school, Manuel did not have enough muscle control to hold onto a bell and participate, said Lesley Wheatley assistant principal and a teacher at the school who has known Manuel since he was 3.

“Manuel would sit and listen to us play,” Wheatley said. “Then one day he came in with a little keyboard and started playing with one finger all of the songs that we had been playing.” The class was stunned, Wheatley said, and from that point on Manuel would accompany the choir on his keyboard.

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Manuel “is very bright, very gifted in computers and has a great sense of humor,” Wheatley said.

Manuel’s condition prevents him from being able to talk distinctively and his jaw, like those of his sisters, hangs open. But he operates a computer that talks.

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The children’s condition gives them the appearance that they are sad, principal Greenwood said. But they’re really not. In fact, Milagros and Guadalupe both seem to be happy children, often picking on their brothers and laughing with their mother.

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When Maria jokingly asks “Who’s a crybaby?” Milagros says “Danny,” referring to her 6-year-old brother.

Candy Murakami, Milagros’ teacher, said the 5-year-old girl seems to enjoy class activities, such as music, math and reading.

“Milagros is very headstrong and determined,” assistant principal Wheatley said. “That’s going to get her far.”

Guadalupe just started at the school.

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Maria and Jose amaze neighbors, teachers and friends with their cheerful attitudes and the affectionate, bubbling environment they have created in their home for all six of their children. People ask how she does it, Maria said. “I say I do it because they’re my kids and I love them. I love them a lot. I give all my time to them and I’m happy.”

“I never feel sad,” Maria said, playing with her daughters on the living room floor. “I don’t have time to get sad.”

That’s not exactly true. At other times, Maria concedes that from time to time she would get angry at God, but not for very long. “At night, when everyone is asleep, I sometimes cry for a little while,” she said. But she added that she wakes up the next morning and gets on with her tasks.

Jose and Maria first noticed something unusual about their first son four months after he was born.

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“He appeared to be weak and was emitting lots of saliva,” Maria said. “He was congested and doctors referred him to Rancho Los Amigos Medical Center in Downey.”

The diagnosis: congenital myopathy, a non-progressive weakness of the muscles that may or may not be genetic. The doctors could not tell the Romeros what caused the condition or whether any other children the couple wanted to have would be afflicted with the disease.

Maria worried her way through her next three pregnancies. “It was so scary,” she said. “I couldn’t sleep at night.” Her three boys were all born without the condition.

But the couple wanted a daughter. So when Maria became pregnant with the couple’s fifth child and an amniocentesis revealed the baby was a girl, the Romeros were elated. They decided to name her “Milagros,” Spanish for “miracle.” But they soon noticed something familiar about their first daughter.

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Like Manuel, Milagros was afflicted with congenital myopathy, as Guadalupe, the youngest of the Romero children, would be when she was born two years later.

It’s often a hard life, family members admit. But they don’t spend time or energy on self-pity or wishing things were different.

“These children are never treated like they’re not capable of doing anything,” Gilgoff, their physician, said. “They’re very disabled but she’s never treated them like anything but another child.”

Maria has expectations for her children, Gilgoff said. She has helped Manuel graduate from high school and has worked to get him special devices, such as a computer with a voice box that allows him to communicate.

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When asked her hopes for her children, Maria said, “That they never get sick, never get sick. I like them the way they are.”


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