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Matthieu Sung-tan’s Fight for Life: A Korean Adoptee’s Crisis Demands Reporters’ Attention

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medium.com
17 March 2025

Dear journalists,

I’m Nameless Adoptee, a Korean adoptee advocating for the rights of adoptees worldwide. Today, I’m reaching out with an urgent plea: Matthieu Sung-tan, a 38-year-old Korean adoptee in France, is dying from a rare genetic disease, and South Korea’s National Center for the Rights of the Child (NCRC) is blocking access to the records that could save him. His story, detailed in two Yonhap News articles published today, March 17, 2025, exposes a systemic crisis affecting thousands of adoptees. Your coverage can make a difference — Matthieu’s life depends on it.

Matthieu’s Heartbreaking Struggle

Matthieu Sung-tan Foucault (Korean name: Jang Sung-tan) was born on December 23, 1986, in Iksan, South Korea, and adopted to France at four months old in April 1987 through Holt Children’s Welfare Society. Raised in a loving middle-class French family, he became a skilled stonemason and carpenter, contributing to the restoration of Notre-Dame Cathedral. He loved playing the guitar and dreamed of a simple life with his wife, Lauriane Simon, and their children, Eloise (3) and Esteban (1).

But since spring 2024, Matthieu’s life has unraveled. He’s suspected of suffering from Fatal Familial Insomnia (FFI), a rare genetic disease that prevents sleep, leading to hallucinations, memory loss, and a disconnection from reality. Yonhap News reports that he’s so exhausted he must close his eyes constantly, yet he cannot sleep — his condition is deteriorating rapidly. Without treatment, FFI patients typically survive only 18 months, with a range of 7 months to 6 years. Matthieu’s survival window is closing.

To confirm the diagnosis and join a clinical trial in Paris that could slow the disease, Matthieu needs his birth parents’ medical history. But the NCRC refuses to release his records, citing Article 36 of South Korea’s Adoption Special Cases Act, which requires birth parents’ consent. Without this information, Matthieu cannot access the trial, palliative care, or social support — and his children face a 50% chance of inheriting the mutation, with a 90% likelihood of developing the disease as adults.

Lauriane’s Desperate Plea

Lauriane Simon, Matthieu’s wife, shared her anguish in a letter published by Yonhap News: “Since August 2024, I’ve been living in tears every day. I will lose my husband.” She describes a man once organized and vibrant, now unable to shop without panic — buying items randomly, overwhelmed by anxiety. Matthieu suffers from excessive sweating, urinary issues, difficulty swallowing, irregular heartbeats, muscle spasms, and severe anxiety. Lauriane, who quit her healthcare job to care for him, fears for their children: “If we had known Matthieu’s family history, we might have avoided having children or chosen healthy embryos through IVF.”

Lauriane first contacted the NCRC in August 2024, explaining Matthieu’s extreme insomnia — up to 21 days without sleep. At the time, he could still communicate, but his health has since plummeted. Now, he struggles to speak, often slipping into unconscious-like states. Time is running out.

The NCRC’s Systemic Failures

The NCRC claims they cannot locate Matthieu’s birth parents, stating they only have their names, ages, and birth dates — not resident registration numbers. This excuse feels hollow. The NCRC has a history of mismanagement — admitting to poor record-keeping from 2013 to 2022, with an ongoing criminal investigation into excessive fees. They promised improvements by July 2025, but their inaction in Matthieu’s case suggests little has changed. Only 16.4% of 6,087 adoption record requests from 2021 to 2024 were granted, leaving thousands of adoptees in limbo.

Jinsi Bae, president of the Montreuil Overseas Adoption Association (MOAA), told Yonhap News: “The state sent these children abroad to save them, and now one is dying as an adult. How can the state remain indifferent?” MOAA, alongside Secretary General Lee Seung-hoon and researcher Kwon Hee-jeong, held a protest on March 12, 2025, in front of NCRC’s Seoul headquarters, demanding transparency. They argue the law should allow disclosure for medical emergencies, citing Article 36, Paragraph 3, which permits exceptions when birth parents cannot consent due to “death or other reasons.” Yet, the NCRC interprets this narrowly, prioritizing privacy over life.

I remain cautious about systemic influences. The NCRC funds NGOs like GOAL at 55%, raising concerns about conflicts of interest. GOAL has been silent on Matthieu’s case, suggesting their independence might be compromised. This isn’t about individual motives — it’s about ensuring adoptees aren’t abandoned by the systems meant to protect them.

A Broader Crisis for Adoptees

Matthieu’s plight is a microcosm of a larger crisis. Thousands of Korean adoptees struggle to access records critical for medical, identity, or family reunification purposes. The adoption lobby, entrenched over decades, has conditioned acceptance of the NCRC’s authority, often at the expense of adoptees’ rights. International trends — like the UK’s 1975 Children Act allowing adoptees access at 18, or the UN’s stance prioritizing a child’s right to know — show a shift toward transparency. South Korea lags behind, clinging to outdated privacy laws.

A Call to Reporters

Journalists, you have the power to change this. Matthieu is a French citizen, his story a bridge between South Korea and your audiences. Your reporting can pressure the NCRC to release his records — and push for systemic reform for all adoptees. I supported MOAA’s March 12 protest but couldn’t attend due to a 3-hour drive. Now, I need your help to amplify Matthieu’s story.

Resources for Reporters

Conclusion

Matthieu Sung-tan is fighting for his life. His wife and children face losing a husband and father — and a future shadowed by genetic risk. Reporters, you can shine a light on this injustice, hold the NCRC accountable, and advocate for adoptees’ rights. Please don’t stay silent.

With hope,
Nameless Adoptee

South Korea, United Kingdom