Japanese teen given 2 weeks to live fulfills dreams with help from family

MARUGAME, Kagawa — A woman who was given only two weeks to live by her doctor managed to fulfill her dreams before she passed away this summer at the age of 19, including holding an exhibition of original illustrations for a picture book inspired by her own life.

Sayane Takegawa, who lived in Marugame, Kagawa Prefecture, in western Japan received treatment for a series of illnesses since her childhood. Even after she learned that there was nothing left to cure her disease, she told her family, “I’d like to have a lot of fun,” and never gave up on living out her life in her own way. The exhibition this summer organized with the help of her family was the fruit of her resilience.

Her first challenge in life came when she was 5 years old, when she complained of shoulder and wrist pains in January 2010, according to her mother Sakiko. Sayane’s hands gradually got swollen, but a hospital in the neighborhood could not identify the cause of her symptoms. Another hospital in the neighboring city of Zentsuji diagnosed her with juvenile idiopathic arthritis, a government-designated intractable disease.

Sayane started seeing a doctor specialized in the disease at a hospital in Kagoshima twice a month, staying overnight in the Kyushu region prefecture. She eventually switched to a hospital in Osaka when she was in the fifth grade and continued treatment. By the time she entered junior high school, her condition had stabilized. She joined a chorus club, made friends and enjoyed her school life.

Yet her happy school days did not last long. She was diagnosed with leukemia in the January of her second year at junior high school. Sakiko, 47, recalls “going completely blank” when she was informed of her daughter’s illness by a doctor. Upon returning home, she reported the diagnosis to the family of five together, including Sayane’s elder brother and younger sister. That evening, the family slept together in the living room, putting futons on the floor.

After about a year in hospital, Sayane reached remission before her graduation. She went on to a correspondence high school and joined a volunteer club. As part of her club activities, she was assigned to tend to the flowerbed in front of Marugame Station, which became an incentive for her schooling.

In June 2022, however, her leukemia relapsed when she was in the third year of high school, forcing her to be hospitalized again. Sayane nevertheless patiently persevered through her ordeal and seldom complained about the hardship of her treatment, according to her mother. During the lengthy hospitalization, Sayane’s wishes to return home grew stronger. After undergoing a bone marrow transplant in February 2023, she declared, “I won’t receive any aggressive treatment no matter what happens to me going forward. Nothing beats staying at home after all.”

Her doctor subsequently told the family that “it was difficult to continue treatment” as there was nothing more that could be done. Respecting Sayane’s wishes, her family let her leave the hospital in October that year.

On March 28, 2024, Sayane was given two weeks to live by her doctor. As she had said upon leaving the hospital, “I’d like to have a lot of fun from now on,” her family went full throttle to fulfill her wishes. They took her on a cherry blossom-viewing picnic at Marugame Castle accompanied by her primary doctor, and invited her friends to their home for a barbeque. Although Sayane could hardly speak, she quietly gazed at the sight from her wheelchair.

On April 18, well beyond the X day after “two weeks,” her family took her on a day trip to Tokyo Disneyland, her first time at the theme park in Chiba Prefecture. On June 1, her family celebrated her coming-of-age ceremony privately ahead of an official local event in January next year. They took a commemorative photo with a cake decorated with the theme of a long-sleeved kimono in front of her.

A promise to hold exhibition of original works for picture book

One of the promises her mother had made with Sayane was to hold an exhibition of original illustrations for a picture book modeled after her.

In the fall of 2023, Sakiko published a picture book titled, “Watashi wa hitori ja nai” (I’m not alone) with Mirai Publishing, based on her daily worries and hopes she had written down in notebooks while attending to her daughter. Comparing her daughter’s longtime hospitalization to an “adventure,” the book tells a tale of a girl facing leukemia and various complications and her relationship with her family and friends supporting her. “I wrote the story to share the preciousness of life,” Sakiko reflected. Sayane’s cousin Hana Ogata, 18, drew pictures for the book. Ogata, a member of her high school’s art club, reportedly worked on the illustrations while reminiscing about the smiles on Sayane’s face when they played together. She said she was given power by Sayane’s resilience.

The exhibition commenced in Marugame on July 1, well beyond the limit of “two weeks.” While Sayane had told her family that she wanted to express her gratitude to those who supported her since her junior high and high school days when she had been in and out of hospital, she was no longer able to move by the time the exhibit got underway, remaining asleep almost all day. On behalf of her daughter who could not visit the venue, her mother took photos and videos of the exhibition and showed them to her daughter to report on the event.

The moment mom let go of daughter’s hand

Early on the morning of July 27, while the exhibition was still underway, Sakiko noticed her daughter’s breathing was getting weaker, as she slept next to her. Just as she let go of her daughter’s hand to contact relatives, Sayane breathed a sigh, and passed away quietly. To Sakiko, her daughter’s face appeared to show that she “lived out her 19-year life.”

“She had a strong sense of responsibility. She was stubborn and clumsy, but was steadfast about who she was and cherished her family and friends,” Sakiko recalled.

“Thanks to everyone’s support, Sayane was able to bring a lot of her dreams to life,” the mother said with a smile. She says she learned from her daughter this strong willpower of “never giving up on my life to be lived in my own way, no matter what circumstances I’m in.”

(Japanese original by Satoshi Kawahara, Takamatsu Bureau)