Eng Raising Funds For Chisas Treatment Uncen 2021

In May 2021, a breakthrough: a British business consortium, moved by a viral video of Chisa’s older brother reading her a bedtime story about “getting new medicine in a faraway city,” donated £200,000. A week later, a celebrity football match organized by a Premier League player added another £90,000. By July, the total reached £1.1 million. Hope flickered.

But uncertainty remained. The treatment center in Chicago required proof of full funding before scheduling. The earliest available slot was January 2022. Chisa’s doctors in London warned that her organ function was deteriorating. In August 2021, a routine scan revealed that the disease had spread to her central nervous system—a development that dramatically reduced the experimental treatment’s projected efficacy.

The family faced an agonizing decision: continue fundraising for a treatment that might no longer work, or pivot to palliative care. They chose to press on. “As long as Chisa is fighting, we fight,” her mother told ITV News in September 2021.

By October 2021, the campaign had stalled at £1.45 million. Short by £350,000. The Chicago hospital declined to offer a discount. Desperate, the family launched a last-minute auction, selling heirlooms and even a car donated by a local dealer. On November 15, 2021, they announced they had reached the goal—£1,800,032. The news made the BBC’s local headlines.

But medical uncertainty does not vanish with money. A pre-travel assessment in early December 2021 revealed that Chisa’s liver enzymes were dangerously high. The Chicago team said she was no longer a candidate for the gene therapy protocol. The treatment had become uncertain in the worst possible way: unavailable.

Chisa passed away on December 28, 2021, at her home in England, surrounded by her family. The raised funds, per the family’s statement, were donated to a research charity studying her rare disease so that other children might not face the same impossible journey.

Chisa was flown to Harapan Kita Hospital in Jakarta on September 20, 2021. She underwent successful mitral valve replacement surgery on September 28, followed by nutritional rehabilitation. She was discharged on November 2, 2021, with a weight gain from 12 kg to 17 kg and no further signs of heart failure.

The ENG raising funds initiative did not stop there. Leftover donations (IDR 4.7 million) were used to buy a year’s supply of antibiotics and vitamins for Chisa, delivered to her village via a student community service team in December 2021.