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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

VOICES: Restoring Family Ties

What it means to find out who you really are and where you came from.

(L to R) Eannee Tan, Nadzirah Ahmad Basri, Noraeni Mohamed

Between 1945 and 1982, 1,147 children were born in Sungai Buloh leprosy settlement in Malaysia. Regulations dictated that if the parents could not find a relative or friend willing to take the infant within six months, it would be placed in a children’s home or sent out for adoption. In later life, some of those children have come back in search of their biological parents after learning of their true identity. Others remain unaware of their origins, or reluctant to acknowledge them, even as their aging parents yearn to see them again.

Care & Share Circle is a non-profit organization formed by Eannee Tan and friends in 2011. It helps reconnect people still living in Sungai Buloh with their children. Among those Eannee has helped is Noraeni Mohamed, who was born in Sungai Buloh to Chinese parents and adopted as a child.* Earlier this year, Eannee, Noraeni and Noraeni’s daughter Nadzirah Ahmad Basri spoke at a series of symposiums in Japan about their experiences.

Eannee Tan: Our mission is to reunite former leprosy patients and their descendants through all possible channels. In the end we hope to empower them with knowledge and courage to preserve their family history.

Not all descendants are able to meet their biological parents while they are still alive. Madam Noraeni strove for years to trace her origins, but her mother was already in her grave by the time she tracked her down.

Madam Noraeni has stood up for her real identity and has assisted others to find their origins. She is definitely a role model for those who are still hiding their connection with Sungai Buloh due to the social stigma attached to leprosy. Together, we have co-authored a book, Reunion at the Graveyard. With this book and a documentary, Children of Sungai Buloh, we hope to encourage more descendants to come back and trace their roots while their parents are still living.

Noraeni Mohamed: I was adopted by a Malay couple who were Muslims. This couple did not have any children of their own. In an effort to keep the truth about my birth a secret, they gave me a Malay name — Noraeni Mohamed.

The day after my adoptive mother passed away, I found my adoption certificate among her things. My search for my true parents began in 2006. After some initial progress, I had to suspend my efforts to nurse my husband, who had cancer.

At last, on December 18, 2009, I saw my mother’s face for the first time. I am very thankful to God for letting me know how my mother looked, even though it was only via a photograph on her gravestone.

I had no hesitation in revealing myself as the daughter of a Hansen’s disease patient, nor was I afraid of being scorned as I was confident that myths about the disease were far from the truth.

My religion, Islam, teaches me to obey and to do good to one’s parents. I didn’t have this chance.

All parents deserve the right to be loved and respected by their children. It is absolutely cruel to deny them the right to bring up and care for the children they gave birth to. Our lives would be chaotic if there was no family line. That is one of the reasons why I wrote Reunion at the Graveyard: so that my children, grandchildren and great grandchildren will not forget their ancestors.

Nadzirah Ahmad Basri: I am very proud to let the world know that I am the grandchild of a Hansen’s disease patient. All my five brothers and late father supported my mother’s search for her lost family. God has destined that we are helping to fight for the rights snatched away from Hansen’s disease patients.

In my opinion, the main need of the Sungai Buloh residents is to be accepted by the public. They are former leprosy patients who have the same rights as other Malaysian citizens. They should also be reunited with their families because it is cruel to separate parents from their children and other family members. I appeal to the public to help in whatever capacity to reunite such families.

At the same time, I would like to call upon all individuals who were born in Sungai Buloh and adopted by others to come forward and fulfil the dreams of their parents, many of whom are still waiting desperately for their loved ones to come back. Finding out one’s real identity is a basic human right worth fighting for.


* Eannee began her work with residents of Sungai Buloh prior to 2011. Her first contact with Noraeni was in 2009.