HANNAH LAUGHED as she explained how one of her friends deems her a human unicorn or how others tend to think she’s either adopted or Russian. There have been a number of times when brazen strangers have reached out to touch her hair, asked to take pictures with her, or inquired how she dyed her hair that color.
Hannah Choe is Korean American, but she was born with the rare genetic condition known as albinism. As a result, she has strikingly pale blue eyes and is platinum blonde amid an ethnic culture predominated by brown eyes and naturally black hair.
Less apparent is the fact that Hannah is also legally blind, has Type I diabetes, and due to the lack of pigment in her skin, is highly susceptible to skin cancer. Although she talks about how her body seems to limit her at times, she explains how understanding this delicate balance has made her more assertive and confident in her abilities.
“I really love learning and reading, but because my eyes are sensitive, I can’t read as much as I want. On the other hand, being legally blind has made me an excellent auditory learner — I have really great hearing. My skin is really sensitive. Although I may not be able to go outside as much because of the sun, I am a more determined person because of it.”
For some, Hannah has been described as a Korean Barbie doll and is considered a rare Asian albino, but for Hannah, albinism isn’t the framework of her identity or even how she describes herself; it’s simply a genetic disposition. “Describe myself? I don’t know. I enjoy listening to oldies music, like ‘60s and ‘70s era. I also really love baseball.”
Hannah has been described as a Korean Barbie doll and is considered a rare Asian albino
Throughout our conversation, her eloquence, perspective, and the manner in which she lives, all served to exemplify her belief that she was born the way she was for a purpose beyond herself; she has found a reason for this particular genetic mutation. She explained how her parents encouraged her each time she struggled or felt discouraged. “They always reminded me that there is a purpose. I can trust that God has a plan.”
Albinism is a condition that is difficult, if not impossible, to detect by ultrasound. As one could imagine, Hannah’s parents, Jennifer and Victor Choe, were initially shocked when their firstborn emerged with white skin and red eyes. (Unbeknownst to most, babies born with albinism have red eyes that eventually fade into blue.)
“When I first saw Hannah, it was definitely a challenge, but I was excited,” Victor recalled. Having their first child born with albinism, both Jennifer and Victor faced a great deal of bewilderment from their respective families. Concerned relatives asked if there was a cure for albinism or if all of their children would be albino. What caused it? What were the physical ramifications?
Faith in God gave them a clear perspective about their blossoming family. “God gave us an opportunity as parents,” Jennifer added. “Our question became, ‘Whatever happens, how are we going to live it out?’”
"Whatever happens, how are we going to live it out?"
As they raised Hannah, Jennifer and Victor wanted her to feel beautiful in her own skin. They reminded her, “You may look different, but being different isn’t necessarily a bad thing. Each time someone made a comment, we made it a point to remind her that she is a walking testament for God.”
Victor continued, “The world will always judge you a certain way [based on your outward appearance], but we all have a kind of handicap. We never wanted to shield Hannah from anything. It was, and is, our job to raise her to be confident in God.”
While Hannah faced tangible challenges growing up with albinism, her family faced an even greater challenge when Hannah’s younger sister, Erin, passed away suddenly.
Erin drowned while she was at a pool party. She was three months shy of her sixth birthday.
“When Erin died, it was as if 14 years of Hannah’s life disappeared,” Jennifer shared. “It challenged us to our core ... to our very foundation. We wanted to live out the Bible, but as you could expect, it was unbelievably difficult.”
We wanted to live out the Bible, but as you could expect, it was unbelievably difficult.
In the wake of her death, Jennifer and Victor consented to donating the parts of Erin’s body that hadn’t been damaged by water. Though the process was agonizing, God birthed a passion for helping others through organ and tissue donation when their family discovered the nonprofit organization, Donate Life. The very act of giving away Erin’s tissues so that a stranger could have another chance at life fortified the truth that our lives are not our own.
As active representatives for Donate Life, Victor, Jennifer, and Hannah not only get to share the beauty of organ and tissue donation through Erin’s story, but they also get to embody a palpable expression of the gospel. There are extremely few experiences that can rival the harrowing pain a parent goes through after losing a child.
There are extremely few experiences that can rival the harrowing pain a parent goes through after losing a child.
But despite that certainty, both Jennifer and Victor recognized the presence and peace of God which rested on their family as they grieved over the loss of their daughter. “We love telling Erin’s story,” Victor said. “We get to share with non-believers how God brought us through one of the most painful experiences a parent could possibly go through.”
The experience also gave Jennifer and Victor an altered perspective of their role as parents and believers. “God gives us the privilege to raise [our kids] for however long we have. With Erin, God gave us five years and nine months,” said Jennifer. “It’s not my job to know why. I believe in a God who is sovereign.”
“It’s not my job to know why. I believe in a God who is sovereign.”
Currently, Hannah is a junior at Pepperdine University, studying administration and nonprofit management. She continues to be deeply involved with Donate Life and is passionate about communicating the impact organ and tissue donation can have.
“She has such a heart for others, and people listen. She has authority because of the way she lives for others.” And as an added bonus, the benefit of her appearance is that people remember her. “Once they see her, they can’t forget her,” Jennifer laughed.
The intricacies in the story God continues to write through Hannah and her family seem to be inlaid with examples of Christ’s sacrifice, grace, and love. They continue to be radiant examples of how we also can view our lives and bodies in light of the Gospel.
As Paul writes to the Romans, “If we live, we live for the Lord; and if we die, we die for the Lord. So, whether we live or die, we belong to the Lord” (Rom. 14:8 NIV).