For family in Romblon, face of ALS is dark

GELYN Malavega stares ALS in the face through her son, Bonbon, lying in the sofa in the family home in San Fernando, Romblon. RODNE GALICHA/CONTRIBUTOR

SAN PEDRO CITY—His was a handsome face and a physique sculpted by years of sports and hard labor. But he is different. He neither spoke nor smiled and gave only an inquisitive stare to an unfamiliar face.

That was a year ago, in June, when the Inquirer met Jeven “Bonbon” Malavega, then 21, in his home in the village of España in San Fernando, Romblon.

“He is sick,” Bonbon’s mother, Gelyn, then 48, said over dinner. At that time, the family did not know what strange disease struck Bonbon.

The family kept guessing. Perhaps, the tetanus that struck Bonbon after a pig bite when he was in fifth grade is only now starting to make its presence felt. Maybe Bonbon fell victim to a hex.

In April this year, the family got its answer. After a checkup at a hospital in Roxas City in Capiz province, Bonbon was diagnosed with ALS (amyotropic lateral sclerosis), a disease which destroys the nerve cells causing paralysis and eventual death.

“He was 21 (Bonbon turned 22 in May) but the doctor said he has the brain of a 78-year-old,” Gelyn said in a phone interview on Wednesday.

Symptoms

The Bonbon that Inquirer saw last year was not the frail, thin man lying helplessly in the sofa seen on short videos uploaded on Youtube and Facebook by Rodne Galicha, an environmentalist and friend of the Malavegas, on Sept. 2.

“This is the most difficult situation I’ve been,” Gelyn would say in one of the videos. “Seeing my son like this.”

Bonbon is third among five children. His father, Ruben, 52, had been in and out of jobs as a construction worker, while Gelyn works as a nutrition officer in their remote village.

His parents could not afford to send Bonbon to college so a year after high school, he decided to work in Manila as a security guard.

“He said he wanted to save up (for college). He wanted to become a policeman. But even then, he would send us his monthly salary,” Gelyn said. Bonbon went home after a year without savings for himself.

It was upon Bonbon’s return to Romblon that Gelyn noticed something was wrong. She said it started with Bonbon complaining of a constant pain in his throat. Later on, Bonbon began to stammer. He was then 18 years old.

“They say (the symptoms of) this disease showed little by little,” Gelyn said. The family went to see several albularyo (traditional healers) on the island, some they paid P4,000 per visit, and were told that Bonbon was just bewitched.

The herbal medicines eased Bonbon’s pain but his condition worsened as time passed by.

“Bonbon started to cringe at very bright lights and was suddenly afraid to go into the water,” said Gelyn. Her son often had lockjaw.

Worried, Ruben took Bonbon to a hospital in Manila but the doctor had no answer, either.

By December 2013, Bonbon lost his ability to talk. He tried to communicate by typing words on a cell phone, but that was gone, too, when he started to lose grip and control of objects in his hand.

One day in February, Gelyn remembered, Bonbon “had this look that he wanted to say something. So I took out our old typewriter and asked him to tap the letters.”

Gelyn wrote down each letter and his son’s message became clear: “I want to be cured.”

“I cried,” Gelyn said. “My son was fighting to get well. But what could I do? We are P50,000 in debt and we had sold our small property in the mountain (the money used for last year’s checkup in Manila),” she said.

Ice bucket

“While we are engrossed with the ALS ice bucket challenge, why not challenge our duty-bearers to address the struggles of our Filipino brothers and sisters who have been suffering this disease?” wrote Galicha on Facebook when Bonbon’s video was uploaded.

Galicha was referring to videos of people, among them government leaders and celebrities, soaking themselves in ice-cold water before nominating another person to do the same or donate to the ALS Association, or to do both.

The ice bucket challenge that went viral on the Internet was a campaign to raise awareness on the ALS disease. Reports said the ALS Association has raised close to $100 million as of late August.

“Yes, I’ve seen it on TV,” Gelyn said when asked if she knew about the Internet craze.

In the Philippines, among those who took the challenge were senators, Cabinet members, movie and television stars, business figures and even news readers.

To Gelyn, however, the ice bucket challenge is as remote as the celebrities she sees only on TV.

“It’s [a] good [campaign] although to someone like me, it was never clear how we could get actual help,” she added.

Resigned

Any help for Bonbon is welcome, Gelyn said, although she said she has resigned to accepting his son’s fate.

Last week, Gelyn went to their village captain to ask for hollow blocks for Bonbon’s final resting place, “if you know what I mean,” she told the Inquirer.

“He is a good boy. Never had any vice. Sometimes, I’d whisper to his ears that help could be on its way although I’m afraid it might be too late now,” she said.