NCRC Denies Birth Family Search Exception Clause for Holt French Korean Adoptee Matthieu Sung-Tan, Who Is Dying Of Fatal Insomnia.
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Matthieu Sung-Tan:
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NEW Related Article - March 16th, 2025.
Naver Article:
"My Husband, Who Was Adopted From Korea, Is In Life-Threatening Danger... Please Help Our Family."
Shared to Paperslip on March 16th, 2025.
Please note that “Mr. Jang Seong-tan” is the SAME person as “Matthieu Sung-Tan”. “Mrs. Jang Seong-tan” is the wife of “Mr. Jang Seong-tan” / “Matthieu Sung-Tan”.
Translation via ChatGPT.
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[Life] "My husband, who was adopted from Korea, is in life-threatening danger... Please help our family."
Input: March 17, 2025, 6:01 AM Updated: March 17, 2025, 6:02 AM Original Article
Reporter: Yoon Geun-young
"Surviving is difficult due to fatal insomnia... Desperate for biological parents' genetic information."
"The National Child Rights Protection Agency maintains that it cannot provide contact information for biological parents."
A letter from Mrs. Jang Seong-tan (Mrs. Matthieu Song-Tan). Jang Seong-tan / Matthieu Song-Tan was adopted to France as a newborn in 1987.
Editor's Note: This article covers the contents of a letter sent to Yonhap News by Mrs. Jang Seong-tan through the Montagne Overseas Adoption Alliance. Mr. Jang is believed to be suffering from the genetic disorder known as "Fatal Familial Insomnia (FFI)" and is in a life-threatening condition. For the convenience of readers, the lengthy letter has been slightly condensed. An interview article related to this issue, titled "The state remains indifferent while adopted children are dying… Is this acceptable?" has been concurrently published.
(See original article for photos) Mr. Jang Seong-tan and his wife, Lorian Simon, when healthy
[Provided by his wife]
(Seoul = Yonhap News) Senior Reporter Yoon Geun-young = Matthieu Seong-tan Pucot (38, Korean name Jang Seong-tan) was born in Korea and adopted to France in April 1987, just four months after his birth.
He is currently believed to be suffering from the rare disease known as "Fatal Familial Insomnia (FFI)," which prevents him from sleeping and is ultimately fatal without a cure.
In order for Mr. Jang to receive national support for accurate diagnosis and treatment, he needs the results of a genetic test from his biological parents to determine if it is a hereditary disease.
Mr. Jang and his wife, Lorian Simon (41), hope to contact their biological parents to obtain genetic information. This requires them to receive personal information such as phone numbers and addresses from the National Child Rights Protection Agency (NCRC) in Korea. This way, they can reach out to the biological parents for help.
However, the NCRC has stated that, according to Article 36 of the Special Adoption Act, it cannot provide personal information without the consent of the biological parents. As it stands, it is difficult for Mr. Jang to obtain the genetic information he needs.
The Montagne Overseas Adoption Alliance (represented by Bae Jin-si) held a protest in front of the NCRC in Jung-gu, Seoul, on the 12th.
In a statement, the group questioned, "How much of an invasion of privacy is it to request genetic information from biological parents?" and described the authorities' refusal to meet such demands as "inhumane and unreasonable."
The organization added, "The government and our society must not turn a blind eye to the issues faced by adoptees," emphasizing that "respecting each individual's life fosters trust in the state and society."
The following is the content of the letter sent by Mr. Jang's wife through the Montagne Adoption Alliance to Yonhap News. The lengthy letter has been slightly condensed for readers' convenience.
(See original article for photos) Jang Sung-Tan as a newborn during his adoption in France
[Provided by Wife]
Letter from Loriann Simon, wife of adoptee Jang Sung-Tan
“My husband, Jang Sung-Tan, was born on December 23, 1986, in Iri City (now Iksan City), South Korea, and was adopted to France in April 1987. In France, his name is Matthieu Santin Foucault.
His adoptive parents were both French and wonderful people. He grew up in a stable middle-class family.
On August 22, 2024, my husband first contacted the Korean Child Rights Protection Agency. He described suffering from extreme insomnia, explaining that he has been unable to sleep for up to 21 days at a time, which may indicate severe insomnia due to sleep deprivation or Morvan’s syndrome.
At that time, my husband was able to communicate relatively normally and was not in as severe a condition as he is now. His health rapidly deteriorated over a few months.
Currently, my husband is not in a coma, but he occasionally appears to lose consciousness. Although he is aware of what is happening to him, he often makes nonsensical statements and experiences hallucinations (olfactory and auditory), delusions, and a disconnection from reality.”
(See original article for photos) Loriann Simon
[Provided by herself]
”His insomnia began in earnest in the spring of 2024. Initially, it was just once a week, but it gradually increased to periods of not sleeping for two or three days in a row. His time for rest decreased significantly, and since July 2024, he has been unable to take naps at all. He also exhibits excessive sweating, urinary issues, difficulty swallowing, irregular heartbeat, muscle cramps, tinnitus (ringing in the ears), and increasingly severe generalized anxiety disorder.
My husband is experiencing cognitive impairment and often struggles to figure out where to start even with simple tasks.
In early January this year, he went grocery shopping twice but felt extreme anxiety at the store. He said, "I didn’t know what to buy, so I just grabbed things randomly." When he returned home, he found that he had purchased four of the same item or bought an excessive number of canned goods, indicating a change in his usual shopping patterns. He can no longer carry out everyday tasks systematically, and symptoms like memory loss and disorientation have appeared.
What my husband is going through is truly horrific and cannot be expressed in words. Unless one experiences this pain firsthand, it would be hard to believe the reality of the situation.
(See original article for photos) The Appearance of Jang Seong-tan in His Baby Years
[Provided by Wife]
He was originally very lively, versatile, physically healthy, and organized. However, he can no longer show those traits.
If we could verify the genetic information of his biological parents, we could investigate more accurately whether this disease has a genetic cause. Fatal familial insomnia (FFI) is a very rare condition, making diagnosis difficult. Typically, diagnosing this disease without family history information occurs only when the disease has reached an advanced stage or through post-mortem examinations.
We are currently waiting for his genetic test results, and without a confirmed diagnosis, we cannot request social support. If we obtain the genetic information of his biological parents, we can confirm family history and receive a more accurate diagnosis more quickly. If the genetic mutation is found, there may also be a possibility to participate in clinical trials to slow the progression of the disease. There is currently no treatment for this illness, but receiving an official diagnosis would allow my husband to access better medical support and palliative care.”
(See original article for photos) Jang Seong-tan Playing the Guitar When Healthy
[Provided by Wife]
”I majored in commerce and management and have also received education in piano and medical fields. I originally worked in healthcare, but I quit my job to care for my husband. I am also dealing with health issues myself.
My husband has qualifications as a stonemason and carpenter, and he participated in restoration projects for cultural heritage across France. He contributed especially to the restoration of Notre-Dame Cathedral and restored antique fireplaces. His hands were like gold.
He was a special person, quiet but always thoughtful of his family. He genuinely loved his children, wife, and parents.
We dreamed of a simple life. We wanted to live quietly and happily in a small house in nature, enjoying art, music, and sports with our children. My husband loved to play the guitar and sing.
But now, our dreams have been completely shattered. Seong-tan is an irreplaceable presence for me and our children.”
(See original article for photos) Jang Seong-tan with Our Daughter Eloise When Healthy
[Provided by Wife]
”I would like to add our children’s story.
If my husband unfortunately has fatal familial insomnia (FFI) and it is hereditary, our children have a 50% risk of carrying the genetic mutation. Among them, 90% may manifest this terrible disease when they reach adulthood.
On the other hand, if my husband is suffering from sporadic fatal insomnia (SFI), I have no way of knowing whether this disease is genetically transmitted. In fact, these diseases are so rare that very few people can provide definitive answers. However, there is still a possibility that our children could be at risk.
If we had known from the beginning about my husband's family history—specifically that one of his biological parents had FFI—we would have been more cautious. We might not have had children or chosen to have a child through in vitro fertilization with a healthy embryo free from the genetic mutation. If we had done that, our children would not have to bear this terrible risk.
keunyoung@yna.co.kr
Yoon Geun-young (keunyoung@yna.co.kr)”
Pressian Article -
NCRC Denies Birth Family Search Exception Clause for Holt French Korean Adoptee With Fatal Insomnia.
PRESSIAN Article As Reported By Naver News:
’Mr. Matthieu, suffering from "Fatal Insomnia"...The Child Rights Protection Agency says, "We cannot apply the exception clause," and denies the request.’
Original PRESSIAN Article
Posted to Paperslip on February 27th, 2025
*Please note that “The Child Rights Protection Agency” is the SAME thing as NCRC (The National Center for the Rights of the Child).
English translation via ChatGPT -
“[Exclusive] Adopted individual with rare disease requests biological parents' information for treatment, but is denied
Published on 2025.02.28 at 6:03 AM (February 28th, 2025)
By Jeon Hong-ki Hye
Reporter: Jeon Hong-ki Hye
Mr. Matthieu, suffering from "Fatal Insomnia"...The Child Rights Protection Agency says, "We cannot apply the exception clause," and denies the request.
Fatal Insomnia is a rare disease where a person cannot sleep even after taking high doses of sleeping pills. Once it manifests, the individual cannot sleep at all, leading to a deterioration in mental function and loss of coordination, potentially resulting in death within months to years.
Matthieu Sung-Tan (Korean name: Jang Seong-tan, 38 years old) was born in 1986 in Iksan, North Jeolla Province, and was adopted to France through Holt Children’s Services when he was just five months old. He suffers from this disease.
Fatal Insomnia is classified into two main types: familial, which occurs genetically, and sporadic, which arises naturally. Mr. Matthieu has not received an accurate diagnosis because he does not know who his biological parents are. This is why he and his wife, Lorian, began searching for his biological parents in Korea last August.
However, Mr. Matthieu has yet to find his biological parents. The Child Rights Protection Agency, which supports the search for families of overseas adoptees, denied Mr. Matthieu access to information about his biological parents. They stated that information can only be provided with the consent of the biological parents (Article 36, Section 2 of the Special Adoption Law).
In a written interview with <Pressian>, Lorian spoke on behalf of her husband, who is in no condition to be interviewed, saying, "I cannot understand why they are refusing when my husband's life is in a critical situation." Article 36, Section 3 of the Special Adoption Law stipulates that if the biological parents are deceased or unable to consent for other reasons, the adoptee can access adoption information without consent for medical purposes or other special reasons.
"My husband’s condition is incurable and causes disabilities, so he cannot work. He shows severe neuropsychiatric and cognitive impairment symptoms and says he cannot sleep at all, even when he closes his eyes to rest. He is also exhibiting symptoms of amnesia.
I cannot leave my husband alone at home, so I have also quit my job. The time spent with him is too precious.
(Since my husband’s onset, neither of us can work) We have moved out and are living with my parents. Without the support and help of our family, we wouldn’t have been able to endure the difficult months we’ve faced. We cannot request disability support or home care for my husband because we don’t have a diagnosis.
This illness is changing my husband, and watching this happen fills me with sorrow and is breaking me inside."
Lorian said, "If his disease is familial, that means our two children have a 90% chance of contracting this terrible illness," expressing her anger, "The Korean adoption agencies and the Child Rights Protection Agency say they must follow the law and guidelines, but whose interests are they serving?"
In response to <Pressian>'s inquiries, the Child Rights Protection Agency stated in a written reply, "Article 36, Section 3 of the Special Adoption Law means that if the biological parents are deceased or unable to express consent due to circumstances akin to death, and the applicant (adoptee) has medical reasons, the information can be disclosed regardless of the biological parents' consent." They further explained that "circumstances akin to death" refer to cases where the biological parents cannot express their consent, such as being in a coma.
The Agency noted, "In the case of Jang Seong-tan, the biological mother is alive. It has been confirmed that the consent verification letter sent by the Agency, which includes the current situation of the adoptee, was 'received by the biological mother herself,' but there has been no response regarding consent thereafter," indicating that Section 3 does not apply.
Ultimately, current laws state that if the biological parents do not consent, information cannot be provided, no matter how desperate the adoptee's situation is.
Professor Sorami of Seoul National University’s Law School (a member of the Human Rights Commission) pointed out to <Pressian>, "Such unfortunate cases arise when biological parents do not express their consent when adoptees request disclosure of their information, and there is no procedure in place to evaluate the necessity for disclosure."
Professor Sorami added, "The current Special Adoption Law stipulates that information can be disclosed for special reasons, such as medical purposes, even without the biological parents' consent, but there are no lower regulations defining what cases fall under this. Hence, there have been no instances of information disclosure."
Article 7 of the UN Convention on the Rights of the Child explicitly states the "right to know one's parents." South Korea ratified the UN Convention on the Rights of the Child in 1991, but it is not being upheld at all. According to data submitted by the Child Rights Protection Agency to the National Assembly last year, from 2021 to last year, there were a total of 6,087 requests for disclosure of adoption information from domestic and international adoptees, but only 1,000 cases (16.4%) agreed to the information being disclosed.
(See photos in original article link)
▲ Matthieu at the time of his adoption. ⓒ Provided by Matthieu Sung-Tan
▲ Matthieu with his children before his illness. His wife, Lorian, shared that he is changing daily due to his illness and that she cannot bear to share his current state.
ⓒ Provided by Matthieu Sung-Tan
Reporter Jeon Hong-ki-hye (onscar@pressian.com)”
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Wouldn’t it be nice if there were any COMPASSION or MERCY in the world of “Post Adoption Services”?
We at Paperslip had never heard of Fatal Insomnia before, but we looked it up and it sounds brutal - about as brutal as NCRC’s denial of Matthieu Sung-Tan’s request to find his birth parents, even though he is (as of this publication) dying:
Fatal Insomnia - Wikipedia
”Fatal insomnia is an extremely rare neurodegenerative prion disease that results in trouble sleeping as its hallmark symptom.[2] The majority of cases are familial (fatal familial insomnia [FFI]), stemming from a mutation in the PRNP gene, with the remainder of cases occurring sporadically (sporadic fatal insomnia [sFI]). The problems with sleeping typically start out gradually and worsen over time.[4] Eventually, the patient will succumb to total insomnia (agrypnia excitata), most often leading to other symptoms such as speech problems, coordination problems, and dementia.[5] It results in death within a few months to a few years, and there is no known disease-modifying treatment.[2]”