(Day 5) 'It will only get worse.'

CITRUS CITY — Cold winter mornings are excruciating on Axel Aguilar’s weakened right leg.

Lying on the queen-sized inflatable mattress the 7-year-old shares with his parents, brother and sister, the joint in Axel’s right hip and leg are stiff. The slightest movement radiates an intense pain. (Watch "The Aguilar Family," a Monitor video presentation)

When possible, the spiky brown-haired boy crawls into his school-donated wheel chair and tries to resume a normal life.

He wheels across the laminate tile in the family’s one-story house, playing with his older siblings and watching television as he prepares for school at Juan Seguin Elementary, in the La Joya district.

“I can’t run or jump or play soccer,” the boy said in Spanish. “But I can do lots of other things.”

Axel is a true-life tale from the Ghost of Christmas Present, a modern-day Tiny Tim.

Both he and the “Christmas Carol” character share a visible limp and are upbeat and playful despite their infirmities. Both suffer from a debilitating, but very treatable disease.

Ten months ago, Axel was diagnosed with Legg-Calves-Parthes disease after staff at his school noticed he was favoring his left leg. His parents found money for two trips to clinics where the disease was diagnosed.

Axel’s condition erodes the femur socket connected to his right hip. It’s common, occurring in about one in 1,200 children. It’s also very treatable with physical therapy and a doctor’s guidance. But Axel’s family doesn’t have enough money for either.

On a good day when the weather is warm and the pain doesn’t bother Axel, he is energetic and joyful, climbing on his father’s lap and playing with garden tools in the yard.

Axel still isn’t allowed to chase his 15-year-old brother across the yard, but the boy — always showing off for family and visitors — seems at ease and happy.

He and his parents say the condition is worsening, though.

His mother, Alma, is crushed watching her child deteriorate.

Dad Alejandro feels helpless, doing all he can to earn a living for his family but realizing he needs thousands of dollars for doctors’ visits and treatment.

Medical professionals say if the condition isn’t treated, it could permanently cripple Axel.

A new life, new trials

A year ago, the Aguilar family was starting life anew in the Rio Grande Valley.

Alejandro, a short, slim man who shows few of his 40 years, previously worked for Mexico’s cement-producing giant CeMex in Monterrey.

“I wanted a better life for our children — a safer home and better schools,” he says.

They settled in a tiny, box house in a colonia northwest of Alton. It was near Alma’s sister and affordable.

Alejandro found work at a nearby citrus grove, watching the field 12 hours a day. For the evening, he found work as a stocker at a local grocer. Between the two jobs, he earns about $160 a week.

With no English skills, Alma, 39, hasn’t found work.

The family’s $640 a month barely covers rent, food, utilities and some cheap clothes.

“We have enough, more or less,” Alejandro said.

They eat, but money is tight, he said.

Sometimes — when it’s really hot outside — Alejandro Jr., 15, and Salma, 11, sleep on the hard living room floor, where it’s cooler.

But the children are attending school, where they are learning English.

Axel and the other children have even made friends.

“A few,” he said.

Among their favorite family activities are visiting the wide swath of stores in McAllen, like Target or those at La Plaza Mall. They can’t afford to buy anything, but Alma said it’s fun to look.

She says life is better than in Monterrey, but harder.

A cure, but no means

Legg-Calves-Parthes stops blood from flowing to the ball on the femur connected to the hip joint. Without fresh blood flowing to the ball of the bone, it erodes and grinds against sensitive nerves.

If Axel enters physical therapy, the symptoms of the disease could disappear by puberty. In fact, often, patients enter their teenage years without any physical signs of their childhood condition, said Jose Cadena, who works with Performance Therapeutics in McAllen.

But patients need treatment soon after symptoms develop.

Without help, Axel’s limp will worsen and become permanent.

“It’s so sad to see my child in pain and there is nothing I can do to help,” Alma said.

A cold winter, no Christmas

The Aguilar home is modest in every sense of the word.

Two tattered arm chairs, an old television with rabbit ears and a rickety kitchen table occupy their narrow living and dining area.

The home has two bedrooms, one with clothes and an air mattress and the other with a few toys and the family’s other belongings.

As the weather warmed in spring, the family returned to normal and Axel’s pains subsided.

“In the summer, Axel is very good,” Alejandro said. “He can run and play. He is normal.”

In October, when the Valley’s first cool winds of the year blew in, the pains started up in Axel’s leg even more intense than before. The wheelchair was becoming a more frequent sight in the Aguilar home.

Signs of Christmas are absent this year.

Even if there was space for a Christmas tree, they couldn’t afford one or presents to go under it, says Alejandro.

Like Tiny Tim, Axel and his family can only afford to survive. The unexpected expensive medical bills since Axel’s diagnosis in February are overwhelming — even without the therapy.

“It will only get worse,” Alma said.

Waiting for Scrooge

In Dickens’s novel, Tiny Tim was saved from his illness by the kind heart of a reformed Ebenezer Scrooge.

In the area of dusty roads the Aguilars call home, there is little hope for such a benefactor.

Alma’s sister, who lives nearby, faces the same dire financial conditions as the Aguilars, as do other neighbors.

The family needs much, but asks for little other than some way to get Axel to a physician’s office, Alma said.

Even if the children go without presents this Christmas, the family says it doesn’t matter as long as they have a way to care for Axel.

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Kyle Arnold covers business, the economy and general assignments for The Monitor. You can reach him at (956) 683-4410.