Taiwan’s only albino couple and their decision to start a family
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- Опубліковано 5 чер 2024
- 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
![Albinism is not a crime [Hello Counselor / 2016.09.12]](http://i.ytimg.com/vi/nwyhh_4E6vQ/mqdefault.jpg)
Selfish? I think people who judge them don't know the meaning of "love"
I think your family is beautiful. I'm Korean, and I too have albinism. I was adopted at age 2 to the US.
I hope they live a happy life
They are beautiful!
WTF. Albinism is not a disease. Good for the couple.
But it's a condition that does make them suffered
They ain't hurting nobody... let them be..
They hurting their kids
They are so🌹 beautiful Snowy
Are people with albinism treated well in Taiwan?
No
@@marshmallow7640 that's ironic because many taiwanese prefer the look of "pale white skin" like kpop idols
like isn't that part of east asian beauty standards?
There are way more disabling "heriditary" diseases out there so let the people be and have kids.
Schizophrenia, ALS or Chronic fatigue syndrome are also highly heritable and way more disabling. (even though those diseases are more like sunburn in that you might be genetically vulnurable but still need external triggers like sun exposure or infections). And unlike schizophrenia or epilepsy, the heredity of albinism is quite simple and thus highly predicable. So one can tell that if one of their children will have children with a non-albino, there is a almost 99% chance of the child being "normal" and just a "carrier". (as the other parent would need to also have at least one copy of an albino gene which is quite rare.)
I tell yeah, society is a load of Bollix! They have every god given right to create a family!
I’m confused would people who have white skin and blue eyes and blond hair be considered a mutation of albino since brown skin is what the majority of the world is?
NOOOOOO???? what kinda rationality is thatt???
@@Alexa-est-une-prixe white skin people lack pigment so y would that not be a mutation
Being White is very ATTRACTIVE in Asia.
But not albino, they judge them
No it’s not
@@ThisCapybaraif so, then why do i see many east asian celebrities looking paler than average euro, some look even paler than albinos and many kpop fans whitewash pictures of kpop idols to the point they look the same color as paper for example: fan bingbing, lisa, suga or dahyun from twice.
ironic because many asians spend money on parasols and sunscreen to keep their skin very pale as possible yet mock people with naturally very pale skin?
@@marshmallow7640sounds contradicting or hypocrite because many asians prefer "white skin" and try so hard to keep their skin pale by using whitening products, parasols or wear sunscreens yet judge people for having a naturally pale skin?! so what kind of pale skin asian beauty standards want?!
so basically they compliment people with fake/artificial/plastic paleness that is caused by either whitening products or avoiding the sun but mock natural paleness that hardly tans from genetics or albinism? what a joke sadly
yeah that's what i thought, like their beauty standards and society generally prefer "white skin" but at the same time they don't like white skin, they generally dont like dark/very tan either? many like white skin yet mock people for being born with a naturally white skin.
seems like society will never be satisfied no matter what due to their pickiness, stupidity and their BS beauty standards or opinions.
They look like Hyperboreans
+15 dread