J

ust six days after a group received massive media support in their campaign to help two young children suffering from a rare disease, the parents of one of the children quit the movement and asked the group to spend its money on other causes.

On Sunday, the group “Gerakan Seribu Rupiah Peduli Azka dan Shafa” (the Thousand Rupiah Movement for Azka and Shafa) was established to raise funds to pay for medical treatment for 4-year-old Muhammad Azka Arriziq and Shafa Azalea who suffer from the rare immune disorder Guillain-Barré syndrome (GBS).

As of Friday, they had collected Rp 389 million (US$45,560) from a public increasingly angered at the government’s refusal to help the two children. Embarrassed by the public outcry, Health Minister Endang Rahayu Sedyaningsih suddenly announced her ministry’s readiness to cover all medical expenses for the children.

Rinawati Rina, Azka’s mother, said Friday that she and her husband decided to leave the group after the government said it would fully cover all of Azka’s medical costs. Azka is being treated at Central Jakarta’s Cipto Mangunkusumo General Hospital.

“We therefore ask the movement to share the donation raised on behalf of Azka with other GBS patients in the country and to no longer use our son’s name to raise funds in the future,” Rina said.

She added that she and her husband Anto Ariyanto were disappointed with the movement because the committee “refused to help other GBS patients who sought support from the movement”.

Widespread media coverage of both Azka and Shafa’s plight led to more GBS sufferers stepping forward, including 17-year-old Tissa Trinovia who has undergone treatment at Dharmais Hospital since June.

Silvia Wahyuni, the chair of the movement, told The Jakarta Post that the committee had not expected more GBS patients to appear.

Silvia said the committee did not intend to take over the government’s responsibility of supporting other GBS patients in Indonesia.

The group has helped Shafa’s father settle a Rp 300 million bill at St. Carolus Hospital, where Shafa was being treated before being moved to Cipto Mangunkusumo.

Shafa’s parents indicated that they also wanted to leave the group in a show of solidarity with Azka’s parents.

“We regret their decision, but we cannot force them to stay with us,” Silvia said.