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Giver of spirit and support
(JP/Dian Kusmawandini) Ira Soelistyo felt she was surrounded by angels when so many people helped her during her son’s fight against leukemia
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(JP/Dian Kusmawandini)
Ira Soelistyo felt she was surrounded by angels when so many people helped her during her son’s fight against leukemia.
From her former boss in Jakarta to a group of Catholic nuns in Amsterdam, Ira found people everywhere willing to help ease the pain she endured during her son Aditya’s long illness.
“At every turn of my journey with my four-year-old Aditya, there were always angelic people around me,” Ira said with smile, recalling the time she had with her son, who died three years ago at the age of 25.
“When I was all alone in Amsterdam with my son and in need of a place to stay, a group of nuns welcomed us at their place and provided us with the warmth of a family in such a cold city.
“And right after that, I promised myself I would pass on their kindness to other people in need.” She went on to found the Indonesian Child Oncology Foundation and the Indonesian Care for Cancer Kids Foundation.
Those people she met might have helped in simple ways, Ira said, but in doing so, they helped release her from her fears and loneliness.
“I still remember how hopeless I was because no hospital in Australia and the United States wanted to accept my son as a patient,” Ira said. “All of a sudden, a well-known pediatric oncologist from the Netherlands answered my call and told me to visit him in Amsterdam immediately.”
This pediatrician, P.A. Voute, changed her life in a way no one else had, because he taught her the most valuable lesson a parent must know when caring for a child with cancer.
“He told me: ‘To cure a child with cancer is to cure the mother first. When you first came here, you looked so terrible, that was why I decided to heal you first’.”
His words transformed her attitude. “I suddenly understood that the recovery of my son greatly depended on me,” the 56-year-old said. “So from that moment, I started to live out loud – strong and happy, so my son would feel the same.”
While learning how to cope and behave, Ira also realized that not even a serious illness should be allowed to take away her son’s rights to play and study.
“Voute taught me that even sick children deserve to live in their own playful world, so their parents should not keep them in bed all the times,” Ira said.
With a suitcase full of experiences, Ira returned to Jakarta. It was 1983, and she did not forget her promise to herself.
“Months later, I met other parents of child cancer survivors, who often asked me for advice,” Ira said. “That was the first time I had the chance to pass on what the doctor had taught me.”
More than that, she also passed on the helping spirit. “I thought it would be selfish for us to think only about our own children. We were lucky because we could pay for expensive medical treatments, but what about those coming from less fortunate families?”
In 1993, Ira and the parents of the cancer survivors finally established the Indonesian Child Oncology Foundation. It reinvigorated child cancer sufferers because it provided cash aid for costly medical treatment. “The foundation also had the opportunity to bring some oncologists from abroad to train local doctors and check up our little patients,” said Ira, who headed the foundation for nine years, said.
After securing plenty of support for the foundation, Ira challenged herself to take a step further.
“I found out that many of the unfortunate families coming from outside Jakarta had stopped the medical treatment, even though we had helped them with cash,” Ira said. “When I asked them, they said they could not afford transportation and accommodation costs.”
For this reason, Ira and her two friends Pinta Manullang and Aniza M. Santosa decided to establish the Indonesian Care for Cancer Kids Foundation (YKAKI), which seeks to improve the quality of life of children with cancer.
Under the YKAKI, Ira and her friends set up Rumah Kita (Our House) and Sekolah-ku (My School), as part of the foundation’s efforts to uphold the children’s rights to education and quality time with family and friends.
“Rumah Kita and Sekolah-ku have been my longtime obsession,” Ira said, adding that both centers had been inspired by her journey with her son in Amsterdam.
“Just as I was helped by strangers like the nuns in Amsterdam, I want Rumah Kita to be a home of love for children with cancer, regardless of their background.
“I only hope the children here can experience the same joy as my son. Aditya might have been sick, but back in Amsterdam, he was still able to enjoy playing and studying in a cozy shelter like Rumah Kita.”
Even though Ira eventually lost her beloved Aditya after more than 20 years of struggle, she has no regrets.
“It never crossed my mind that my long journey with Aditya was something fruitless. Instead, God gave me enough time to take care of him and learn many things.”
She smiled.
“I believe this is just the right path that I have to take. And now, it’s time for me to revive the spirit of my son within the hearts of other children with cancer.”
