Chisa (full name withheld for privacy) was a 7-year-old child from the rural Jayawijaya regency, brought to Abepura General Hospital near UNCEN’s campus in March 2021. Diagnosed with rheumatic heart disease requiring valve replacement surgery and severe protein-energy malnutrition, her only hope lay in treatment at a specialized cardiac center — either Dr. Sardjito Hospital in Yogyakarta or National Cardiovascular Center Harapan Kita in Jakarta.
The total estimated cost: IDR 185 million (~$12,900 USD at 2021 exchange rates). For Chisa’s family — subsistence farmers with no health insurance — this was an impossible sum. eng raising funds for chisas treatment uncen 2021
Despite the noble intent, the campaign encountered significant hurdles: Chisa (full name withheld for privacy) was a
| Year | Activity | |------|-----------| | 2021 | Launch of GoFundMe / JustGiving page; initial social media push using hashtags like #HelpChisa | | 2022 | Charity runs, bake sales, online auctions featuring local artists in England | | 2023 | Partnership with a UK-based medical charity for matched funding | | 2024 | Crowdfunding updates showing treatment milestones; second phase for post-op care | | 2025 | Sustained small donations, merchandise sales, awareness campaigns | The total estimated cost: IDR 185 million (~$12,900
Chisa, whose full name has been partially redacted for privacy in many campaign documents, was a lively, curious child living with her family in southern England. In late 2019, following months of unexplained fatigue, developmental delays, and intermittent fevers, doctors delivered a shattering diagnosis: a rare genetic disorder—possibly leukodystrophy, neuroblastoma, or a metabolic condition requiring gene therapy. By 2020, as COVID-19 overwhelmed hospitals, Chisa’s treatment options in the UK had dwindled. The NHS, though world-class for common diseases, often lacks approved protocols or funding for ultra-rare conditions affecting fewer than 100 children nationwide.
The only promising treatment, a form of targeted gene therapy or stem cell transplant, was available not in England but in the United States or Germany, at a cost exceeding £1.5 million. This set off a frantic race against time that spilled into 2021.