The loss of a child is the most devastating experience a parent can face – a piece of them is lost, the future forever changed.
Yeni Dewi Mulyaningsih, commonly referred to as Bu Yanie, lost her son Taufan in June 2013 to AML Leukemia. Taufan was a patient at Cipto Mangunkusumo Public Hospital from 2010 until he passed away – and during his stay, the cheerful boy brightened up the days of the other kids in the ward, their parents and the hospital staff.
Remembering her son’s cheerful disposition and fighting spirit, Bu Yanie realized – despite her grief – that she may have lost her child, but was still in a position to help others going through the same experience.
“I started to go back to the hospital, even though it was very hard at first,” she said. “But I wanted to help and share my knowledge as I was connected to many volunteers, foundations, communities and donors. I also knew a great deal about the paperwork that needs to be filled out and different kinds of medicine.”
Bu Yanie approached the mothers of other patients to find out how she could help. The patients come to Jakarta from all parts of Indonesia, and it is hard for the families as they don’t have any family or friends in the city they can count on. Talking to Bu Yanie and striking a friendship in tough times like these to many of them is invaluable. Bu Yanie encouraged other mothers to help her collect toys that they distributed among the children.
“The amount of donations was incredible,” she recalled. “And the kids were really happy – the power of a smile, coming from children suffering from cancer, is incomparable.”
With the support of volunteers from the CSR Programme Count Me In, Bu Yanie decided to establish her own community, which she named after her son: Komunitas Taufan. Working together with a team allowed her to reach more children, parents and to extend her activities.
“While the patients are happy to receive toys, emotional support and our friendship, they also have basic needs that need to be fulfilled,” Bu Yanie said. “They need diapers, strollers, things like that. Once we started to provide them with their basic needs, one by one, more donations started pouring in, and we realized that what we are doing has gone beyond ‘just’ a community.”
In September 2014, Komunitas Taufan obtained legal status as Yayasan Komunitas Taufan (Taufan Community Foundation). With the support of volunteers and donors who share the same vision, Bu Yanie finds strength in her work, and it helps her to continue moving forward.
Bu Yanie and her team regularly visit hospitals and patients at home who live all across the Greater Jakarta area. In total, they support and take care of 700 children. It is not easy to monitor each patient’s development and organize visiting schedules among the volunteers and the core team.
“When we visit the patients at home, we usually try to cheer them up by bringing colouring books, making beads or other activities,” Bu Yanie explained. “Once the children are settled, we talk to their parents and ask them about the progress or if they need anything.”
Besides the ward, home and support visits, Komunitas Taufan regularly hosts fundraising events and campaigns, workshops and exhibitions, and also organizes fun trips for the children and their families to brighten up their day.
“Happiness is the best medicine,” Bu Yanie said. “Sometimes, the children’s spirit is revived after one of our fun trips, so they feel motivated again to take their medicine, continue their treatment or simply eat again. We deliberately choose patients who have been sick for a long time and are in need of cheering up.”
These fun trips – to the zoo, to the fishing pond, Sea World, Kidzania or the cinema – are also a welcome change for the parents who are often so sick with worry that they tend to forget to take care of themselves, both physically and mentally.
When asked about the biggest challenges, Bu Yanie said that the growing number of patients means a lot more responsibility on their shoulders.
“We are working hard to raise awareness, find more people to join our activities and connect with other communities,” she said. “We also try to educate patients and their parents to change their mindset – not only to receive, but to learn to be independent.”
It is fair to say that Komunitas Taufan has become Bu Yanie’s life. Even though she is supported by her team, volunteers, donors and friends, she is the one to hold everything together.
“It is a lot of work, and it can be very tiring sometimes,” Bu Yanie acknowledged. “Being among the children and their parents makes me feel like I haven’t lost Taufan.”