Help bring Palliative Care to Indonesia's children

At the tender age of 13, Aisyah* has experienced more trials than most children her age.

Aisyah knows she has an illness that makes her different from her friends. To begin with, she has to take medications every single day for the rest of her life. Aisyah is living with a severe immunosuppressed condition that makes her body susceptible to opportunistic infections. One such infection landed her in the hospital for almost 2 months, which brought her to Rachel House.

Since being admitted to Rachel House’s palliative care service, under the loving care of Nurse Dadan and Ibu Riswati, Rachel House’s community health worker (“cadre”),  Aisyah’s condition has greatly improved. A glimmer of happiness begins to show in her eyes.

As her health returns, Aisyah finds a safe haven in the mosque near her home. Here, she has the opportunity to study the Quran with a teacher and other students. While learning to read the Quran with her friends, Aisyah could feel the resemblance of a “normal life” – something she has rarely experienced. Aisyah who never dared to dream before, now for the first time has a dream that she would like to pursue. She wants to get a scholarship to Cairo. This dream makes her even more eager every time she visits the mosque.

Late last year, Aisyah started experiencing some discomfort in her left eye that affected her vision. In a matter of a few days, her right eye began to exhibit the same symptoms. And rapidly, the vision in both eyes was compromised. After several long and extensive medical investigations, Aisyah was finally diagnosed with Ocular Tuberculosis.

Little Aisyah has to swallow the bitter pill that she might not be able to get her vision back and that she must now learn to live with these new limitations. Despite this latest setback, her desire to continue to study the Quran has not decreased. Every day, Aisyah continues to visit the mosque to listen to the recitation of the Quran read by her friends. Aisyah even has a new dream of becoming a Hafiz (memorizer of) Quran.

Moved by her daughter’s undying love for the Quran, Aisyah’s mom shared her feelings with Ibu Ris. During that conversation, Ibu Ris found out about Aisyah’s wish to learn to read Braille, so that she can continue to recite the Quran with her teacher and her friends at the mosque.

Determined to find a way to help, Ibu Ris relayed Aisyah’s story to everyone at Rachel House. The “ball” was immediately picked up by Hapsari (also known as “Hapi”), Rachel House’s Resource Manager, who contacted her cousin, who is a member of a pesantren  (Islamic Boarding School).

When the Al Quran in Braille was delivered to Aisyah’s house, Ibu Ris was greeted with happy tears. “Thank you, Bu Ris, for always helping me,” said Aisyah, holding the Quran tightly to her chest.

Aisyah’s tears of joy bring happiness to us all. Not only to Ibu Ris, but to everyone at Rachel House who wants so much to help make her dream come true.

At Rachel House, we do not only provide medical care for our patients, but we also strive to help keep our patients’ dreams alive. We firmly believe that every child’s dream is worth fighting for because through these dreams, spirit, and hope can emerge.

* Name changed for privacy