Hope Lives On, in All of Us. By Mona a care-giver.

This true account is a special dedication to the team of doctors, nurses and NGO friends in Kuala Lumpur, Kuching (Sarawak), Jakarta and Pontianak (Kalimantan). It is a story of love, compassion and dedication across national borders.

January 29, 2016. Isaac Tan (Crisis Home) referred a case of a 25 year old Indonesian woman and her 3 year old daughter named Hope. The child’s Malaysian father died a couple of years ago, leaving mother and child homeless in Kuching, Sarawak. All members of the family were diagnosed with HIV. Isaac, with the assistance of Sarawak AIDS Concern had been providing support services to the mother and child, working on limited resources made available to them. At the point of contact, the child was hospitalised for cancer.

January 30, 2016. Baby Hope left us. It was the mother’s wish for Hope to be buried in Entikong, a small village across the Sarawak border. It was not an easy task, trying to bring Hope home. The death certificate was already stamped, clearly stating that Hope was retroviral positive. Furthermore, Hope was a Malaysian citizen. The infectious disease (ID) specialists at Sarawak General Hospital did their best to facilitate Hope’s return. The Indonesian Embassy was not forthcoming with any offer of assistance, after learning Hope’s family and health history. It was the Indonesian immigration who made it possible. They consented to Hope being transported across the border. It was a miracle!

February 2, 2016. Baby Hope was laid to rest. Her funeral service was full of dignity, surrounded by family and friends. May you rest in peace Baby Hope. You were immensely loved. Without Hope, the mother was no longer eligible for antiretroviral treatment in Malaysia. She had defaulted treatment several times due to dire personal circumstances. People who work in this industry know too well, basic survival needs supersedes treatment adherence. The next priority was to ensure the mother is able to access treatment in Indonesia as soon as possible.

February 25, 2016. Isaac flew to Pontianak to accompany Hope’s mother for her first consultation at Rumah Sakit Umum Dr Sudarso. Her CD4 result was poor, she will require speciliased medical treatment. Nonetheless, the consultation was a great success. To quote from Isaac’s message “Thanks again for all your love n efforts that helps to make this journey with (Hope’s Mother) possible. All is well at Rumah Sakit Sandrosa Pontianak Kalimantan Indonesia this morning. Will going again to the hospital tomorrow morning for (Hope’s Mother) to do the blood test. (Hope’s Mother) will be getting the very costly monthly HIV medicine free (FOC)! The immediate needs will now be for her monthly traveling expenses which is about rm150 rm200 for her survival n get treatment at Rumah Sakit Pontianak. From tomorrow blood test results if her CD4 is too low, Dr Wiwi will start her on the new n very good One month an Injection HIV treatment to bring up CD4 level. I’m amazed by the advance of HIV treatment in Indonesia.”

There are many people we must acknowledge in this story for acting so swiftly upon our request and for making that phone call to Kuching General Hospital and speaking so gently to the Infectious Disease specialist. Thank you Dr Wiwi Endang Susanti and Mbak Nany Andi Syamsudin for providing the best patient care possible; and for being kind and gentle to a fragile soul. And most of all, thank you Isaac Tan, for bringing us all together by your efforts, for taking care of Hope and her mother and last but not least, for reminding us that Hope must live on, in all of us.

I count my blessings every day for the honour for having wonderful colleagues. Apologies for any omissions made or errors in describing the turn of events. I was merely a bystander from afar.

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