KUALA LUMPUR, April 13, 2013 — Lim Booi Nya was only a teenager when she was quarantined in the leper colony in Pulau Jerejak, Penang some 50 years ago.

But she married a young man and had three children who she was forced to give up before they were relocated to the Sungai Buloh Leprosy Settlement.

Under draconian laws at the time of British colonial rule, “lepers” were not allowed to raise their children for fear they would catch the disfiguring disease that affects the skin and nerves and if left untreated, can cause fingers and toes to become shortened and deformed, or the nose to collapse in on itself, as cartilage is absorbed into the body.

“When my children were born, I only saw them for a few moments and then they were taken away from me. I did not even get to hold them,” the 67-year-old Booi Nya told The Malaysian Insider in Mandarin this week.

Now, she wants to meet them, and perhaps finally get to hold them too if she can find them, according to the Sungai Buloh Oral History team that is focused on the history of the leper colony.

“In response to societal needs, religious and welfare bodies set up children’s homes to look after the inmates’ children. However, due to limited resources they were unable to take in many children and the homes were frequently full,” team researcher Tan Ean Nee said in a statement highlighting the issue.

“As a result, many children were sent out through legal or illegal means after their biological parents gave consent for the adoption,” she added.

This week, Booi Nya and two other former leprosy patients came forward to tell their stories and to call attention to their search for their children.

Booi Nya showed reporters the birth certificates of her three children, which she had managed to obtain from a friend who worked in the National Registration Department, and two advertisements she had placed in Chinese newspapers in 1995 looking for them, to no avail.

“We try our best to help them but the problem is that the old records are not complete. We go to the registration office in Putrajaya and ask… also not complete. Birth records before independence are not in the computer system as they are not digitalised. We asked to see the old files and were told they were lost,” Ean Nee said.

Another Sungai Buloh inmate, Tan Cheng Hoe, 84, declined to speak at the news conference and told his story via a pre-recorded video testimonial prepared by the Sungai Buloh Oral History team, in which he spoke of several near-misses and deflated hopes in his search for his children.

In the video he recounts how, about two years ago, he received a phone call from a stranger who sounded like a young Malay woman repeatedly asking him if he was indeed Tan Cheng Hoe, and who seemed to know where he lived.

“I asked, ‘Why you ask two times?’ I don’t know what is happening. The best is you come over to see me, tell me what it’s about. I can explain to you. I live at house no. 297,” Cheng Hoe said in the video.

“I wanted to tell her to see if she will come and look for me,” he added.

Cheng Hoe suspected the young woman on the phone to be one of the six children he had given up for adoption when he was just in his twenties.

But the young woman never showed up on his doorstep, and he never heard from her again.

Four adopted children, who are now fathers and mothers themselves, were also at the news conference to tell the public about their search for their parents or siblings.

One of them was Noraeni Mohammed, 56, who told The Malaysian Insider, “When I was seven or eight, an aunty told me I was adopted. My adoptive mother was angry when I told her I wanted to find my real parents.”

In the book The Way Home, she told Ean Nee, the co-author, that she only realised her real name was Cheong Yee Moi and that she was Chinese when she found her adoption certificate among her adoptive mother’s belongings upon her death.

Noraeni’s case is one of the few success stories, but a bittersweet one: by the time she found her biological mother, all she could see was her likeness in the picture on her mother’s grave.

Through the settlement’s records, she also found that she has an older sister, Cheong Yer Moi, somewhere out in the world, who she is currently searching for.

“Maybe she was adopted by someone outside and maybe her name has been changed on her IC too if she was adopted by a Malay family,” she told reporters.

Accompanied by her two sons, daughter-in-law and her grandchild, she said, “They are not embarrassed that their nenek is from Sungai Buloh.”

But it is harder for some others. Despite having exorcised their bodies of leprosy, some of them still have vivid memories of the stigmatisation they suffered at a time when there was widespread fear and a lack of understanding about the disease.

“You know, my sister blamed me for being an embarrassment to the family. She blamed me for not being able to find a husband until she was 27,” Booi Nya told The Malaysian Insider in her home, wriggling the toes on her bare left foot as she stretched her right leg, capped at the foot with a black sock.

“I have 17 brothers and sisters in Penang, but I don’t want to go back. Everyone knows about me back there. I don’t want people to talk,” she said.

It is the reason she is still in Sungai Buloh, even though it has outlived its original purpose after a treatment was discovered in 1969 to keep the disease at bay, and an effective cure in 1980.

When it was built in the 1930s during British colonial times, the settlement was the world’s second largest “leper colony”, housing in its heyday up to about 2,000 patients, forcibly segregating them from society.

Since 1969, however, leprosy patients no longer had to be quarantined and could seek treatment wherever they lived.

The 200 or so former leprosy patients left in Sungai Buloh are cured of the disease but remain because they have become used to life there and the shelter it provides.

They are no longer an isolated community, and are today flanked by the Sungai Buloh Hospital, the medical faculty of Universiti Teknologi Mara, and numerous flower nurseries.

National Leprosy Control Centre chairman Tan Hing told reporters, “These parents now want to find their children not because their lives are bad or they are poor... They just want to see their children, even if it’s just once, to see if they are okay, and if they’re not, to say, ‘Maybe I can help them.’”

These former leprosy patients’ search for their children is one of near-misses, broken promises, tugs-of-war between biological and adoptive parents — and a deep regret for having given up their children despite the often extenuating circumstances they were in.

Lee Jin Ai, 69, another Sungai Buloh inhabitant, had made her daughter’s adoptive father promise to bring her back to visit when she grew up, but he never did.

“Aiya! My daughter was four months old when she was given away... Her adoptive father was selling biscuits, he presented us with 30 biscuits... My four-month-old daughter in exchange for 30 biscuits.

We as parents are really like hungry ghost. This heart is very painful,” she told the Sungai Buloh Oral History team in a video testimonial, as her voice cracked with emotion.