Not water but help pours for ALS patient from Romblon | Inquirer News

Not water but help pours for ALS patient from Romblon

/ 02:48 AM September 15, 2014

Buckets of ice-cold water did not freeze the hearts of some of those who took the “ice bucket challenge,” as they proved it to be more than just an Internet craze.

Days after the Inquirer ran a story on Jeven “Bonbon” Malavega, 22, from Romblon province, who suffers from amyotrophic lateral sclerosis (ALS), a school and several other individuals sought out ways to help his family.

“Many in our community took the ice bucket challenge, so I am mobilizing the students to make sacrifices and gather contributions for Bonbon,” Jesuit priest Ari Dy, president of Xavier School, said when he first contacted the Inquirer on Facebook.

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Another was ABS-CBN Hollywood correspondent Yong Chavez, who sent the Inquirer a private message on Twitter.

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“I just saw it (Bonbon’s story) and my heart broke for them. So many ice bucket challenges but the help (reaching the sufferers) seemed little. It’s sad,” she said.

Dy said in a phone interview that many of their students and teachers had taken the “ice bucket challenge” since it became popular on Facebook to raise awareness about ALS, a rare neuro-degenerative disease.

The campaign involves taking videos of a person as he soaks himself in ice-cold water before nominating another to do the same and/or donating to ALS Association. ALS Association was reported to have raised $100 million as of August.

“But [the donations are raised] abroad. It’s foreign and not too many know how to donate online,” Dy said.

He said reaching out directly to an ALS sufferer “completes the loop” of the challenge.

Organized by a school principal, whose parent had died of ALS, Xavier students gave “small talks” about the disease during their lunch breaks and collected donations among themselves.

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“We wanted them to donate out of their allowances instead of them asking from their parents,” Dy said.

The school, based in San Juan City, was able to raise about P15,000 in a week and used the money to buy a hospital bed, medical supplies and adult diapers for Bonbon.

On the other hand, Chavez and her friends from Los Angeles, California, also sent their donations to the Malavegas.

It was learned that other anonymous individuals sought the family directly.

In a phone interview on Sunday, Bonbon’s mother, Gelyn, said someone working for a big pharmaceutical company last week sent her P3,000, which she used to put Bonbon on dextrose and to buy ointment for his bedsores.

Bonbon has been bedridden since April and has also lost his ability to speak, swallow solid food and control his bowel.

The family has incurred debts since Bonbon got sick over two years ago, or just before he turned 20.

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His father, Ruben, is a construction worker while Gelyn is a barangay (village) health officer.

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