T

he Surakarta chapter of the Indonesian Red Cross (PMI), in cooperation with Surakarta'€™s city-owned Moewardi hospital, has taken the initiative to support one-year-old Calista Ramadani, who was diagnosed with Alagille syndrome.

PMI will open a bank account under the name of PMI Care for Calista Humanitarian Purse, while the hospital will provide further medical supervision for Calista, who is currently undergoing outpatient treatment at Cipto Mangunkusumo Hospital (RSCM) in Central Jakarta.

'€œWe will help with medical expenses that are not covered by the BPJS [Social Security Management Agency] program,'€ Surakarta PMI spokesman Sumartono Hadinoto said recently.

Calista was one of two twins born on July 11, 2013 at Moewardi hospital. Her twin sister, Mikaela Natania, died three months ago during a biopsy procedure at RSCM. Calista and Mikaela, born after eight months at a weight of 1.7 kilograms, were diagnosed with Alagille syndrome, a rare and genetic disorder that can attack the liver, kidney and other parts of the body.

They are the second and third daughters of Saryanto and Roberta Fani.

'€œAt first, I did not believe the diagnosis, so I sought second opinions from the Muhammadiyah and Panti Waluyo hospitals in Surakarta. They gave the same diagnoses,'€ Roberta said.

The babies were referred to RSCM for liver transplants, each at a cost of Rp 1 billion (US$86,415), but Saryanto and Roberta did not choose to go ahead with the procedure because they did not have adequate funds. The babies were later treated at RSCM in May this year but, during a biopsy, Mikaela lost too much blood and passed away.

Roberta said she was still struggling to cover a range of other medical expenses for Calista, which cost around Rp 1.5 million. She added that she had borrowed money by using her house as collateral. The family also has to go back and forth between Surakarta and Jakarta to buy medication at RSCM. Calista, who regularly takes eight different medicines, must constantly use a nasogastric tube (NGT) feeding hose and can only consume breast milk and special formula. The one-year-old currently weighs 3.5 kg.

Moewardi hospital management said it was the first time it had handled an infant with Alagille syndrome. The hospital has arranged a patient transfer with RSCM, so it can continue the treatment and medication for Calista in Surakarta.

'€œWe cannot give a medical guarantee, but we will do our best to help Calista,'€ said Moewardi hospital representative Prof. AA Subiyanto.