Albinism is a hereditary genetic condition that causes a lack of pigment in the hair, skin and eyes. In Taiwan, about 2,000 people live with this condition. Two of them are Lin Yu-hsuan and Lee Hsin-hui. Together, they are the only albino couple in the country. A few years ago, the two of them decided to start a family, triggering a storm of public controversy. Some said the two were being selfish, forcing another generation to live with their genetic condition. But others supported the couple''s decision, saying it was nobody''s business. Today in our Sunday special report, we check in on the couple, who show us what life is like with their expanded family.
It’s five in the afternoon and Taichung is still stuffy with heat. Lin Yu-hsuan and her firstborn walk in front, followed by father Lee Hsin-hui . They’re headed out together to pick up their other son from preschool.
Lin and Lee are the only albino couple in Taiwan, and both their sons have albinism too. The lack of melanin in their skin means they can’t spend too long in the sun. The condition also means they have vision problems, which make daily life a little bit more difficult for the family, including the children.
Lin Yu-hsuan
Albino mother
I can read this, because he writes it all very big. But for documents like this, texts that use a font size 8, I have to use a magnifying glass. Nowadays I take a picture with my phone and zoom in.
Chi Li-hung
Lee Hsin-hui’s mother
She told me her kid sits in the front row in class. I asked her whether he was able to see the blackboard and she said no. I asked, “So what does the teacher do?” She says they write it on a small whiteboard for him.
Often, people with albinism can have visual acuity as low as 20/100 or 20/200. It’s also common for them to face bullying at school.
Lin Yu-hsuan
Albino mother
For example, if I touch someone’s desk, they might say, “Watch out, your desk is diseased now!” Starting eighth grade, I started touching their desks often on purpose. I was so mad.
Lee Hsin-hui
Albino father
It was before middle school. They would make fun of my white hair, and they’d ask me if it was the same color as down there.
Lee is the only one with albinism among three siblings. His hometown is in a rural and conservative part of Miaoli. He had a rough childhood here 30 years ago.
Chi Li-hung
Lee Hsin-hui’s mother
People said I had hooked up with a foreigner. My mother-in-law said she didn’t want the child. I told her that if I, his mother, don’t want him, who else is going to love him and care for him? I hugged him and cried. Nobody wanted him. Whenever he got sick, or anything, I was the one to do it all.
Tsai Feng-po
OB-GYN
There are about 6,000 genetic disorders that humans can be born with. But not all of them can be found through tests. For example, diabetes and high blood pressure are hereditary, but can you test for them before birth? No. Currently, our instruments and technology have no way to predict skin color, hair color or eye color. There’s no way to do that.
Lee’s mother wanted to save her child from further torment. But in the end, her son married a woman with albinism and they had two albino children together.
Chi Li-hung
Lee Hsin-hui’s mother
I said, if you get married, so be it, but don’t have children. They said, “OK.” I told them how difficult it would be. I said, “Raising a child is really very tough, and especially when both of you are like this, it’ll only be harder.”
Su Yi-ning
Genomics company CEO
If both parents have albinism and it’s the same type, their children, no matter if male or female, will all have albinism too. That’s the laws of heredity, because it’s a recessive genetic disease.
About 2,000 people in Taiwan have albinism. The condition makes them stand out in society, and many experience rejection in dating and marriage. But Lee and Lin found each other and decided to move forward together.
After marriage, and knowing full well the consequences of albinism on daily life, they decided to fulfill their dream of having a child, despite their families’ reservations. In 2015, they had their first child. And one year later, they had their second. Both boys were born with albinism.
Lee Hsin-hui
Albino father
We had the means, so why not? My wife said that this way, they can keep each other company. I said, OK. I didn’t think about it much more. Some might say that we are selfish. Like, how could we want to go for a second child after having one like that? I thought, it’s fine. This is our life, and we are the ones living it.
Lin Yu-hsuan
Albino mother
Say, once I’m old - after I’m gone. If my older son has nobody else, I would think… How can I put this? If, at that t
8 авг 2024
