When we first shared the story of Karunia, a young girl with Apert syndrome, she blessed so many of us. Recently, Compassion Australia caught up with Karunia and her family to learn how she is doing. Be inspired by these beautiful photos and this family’s love and bravery!
When Chandra, a farmer in Indonesia, saw his baby girl for the first time, he wept. “When my child was born, I knelt down and prayed,” he says. “I thanked God she was born.”
But as he looked upon his little daughter’s face, the dreams and hopes he had built for her in his mind came crashing down.
His baby waved her hand. But where there should have been five tiny fingers, and nails as small and perfect as seashells, her fingers were fused together into a club. There was a sunken dip in her forehead and her dark eyes protruded.
“I felt crushed and hopeless,” he says.
How would he explain their daughter’s condition to his wife?
He helped hospital staff to dress the baby and wrap her in a blanket. He covered her feet and hands with gloves and socks before handing her to his wife with a shaky smile. They named their little girl Karunia, meaning “bounty” or “prize” in Indonesian.
Then Chandra called his pastor to help break the news of their daughter’s condition to his wife, Angelina.
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“The pastor came and asked all the family members to pray together before he spoke,” Chandra recalls.
“My body was shivering upon hearing the confession of my husband. I just cried and wondered why God had entrusted this to me,” says Angelina.
Karunia was born with Apert syndrome, a congenital condition in which the bones fuse together too early in the womb. It affects the skull, hands and feet. While treatment is available, there is no cure.
As a baby, Apert syndrome gave Karunia a difficult start to life.
Apert syndrome caused her pain, high fevers and sometimes she struggled to breathe. Chandra and Angelina hated seeing their daughter suffering, but worse still were the stares and fearful looks people in the community gave their girl.
Neither Chandra or Angelina had a good education and they struggled to care for Karunia, who needed specialized care. But help came from the local Compassion Survival Program, who registered Angelina when Karunia was a year old.
With support and education from staff, Angelina and Chandra gradually had a better understanding of their baby’s situation. Gradually, their fears and anxieties lessened, and they accepted her condition.
Through home visits and activities at the Compassion center, staff encouraged them to think positively about their baby. Today, they are Karunia’s biggest fans and fiercest advocates.
“I started to feel strong,” says Angelina. “I told my husband that I love her even more than if I had a healthy child without disabilities. It is because of the strength of God.”
Early intervention from the Survival Program, including monthly medical checkups, helped Karunia to become healthy. Staff helped the family to access a government program for low-income earners that funded a special surgery to create fingers on her right hand, while the program covered the costs of her medicine. A second surgery followed in 2017 to provide her with more mobility in her right hand.
When she was old enough, a healthy Karunia graduated to the Child Sponsorship Program, where she has impressed staff with her courage and ability to learn.
“I love to play with my friends at school and at the centre. I love to lead prayers or singing,” beams Karunia.
Agnes Singel, Karunia’s teacher, explains, “I wasn’t sure about her ability in the first semester, but now I’m sure she is one of the good students in the class. She is focused and quickly understands anytime a teacher gives an instruction to the class.”
Karunia may not know it, but she is a trailblazer.
Perhaps her greatest accomplishment is one she may not even be aware of yet. Karunia lives in a small community in east Indonesia, where physical differences are rare. She’s the first to be born with Apert syndrome in her area, and her condition still attracts stares and hurtful comments.
“There are some who bully Nia,” says her father. “They mock her by saying, ‘Hey, look, it’s Nia, the deformed girl’.”
But with the support of her parents, family members and program staff, Karunia is a confident young girl who not only accepts her condition but is changing community mindsets.
“’You are God’s gift’,” Chandra firmly tells her. “When they bully you, you can say that you are God’s gift and not a creation of any man.”
Karunia beams. “I am beautiful like my mother,” she says.
“When my friends mocked me because I don’t have normal fingers, my mom taught me to say back to them that this is what Jesus gave me.”
To those who know her, Karunia is a gift.
“She is my own flesh and blood, and we have to take care of her for as long as God gives us life,” says her mom.
“Because God has a purpose for her.”
You can sponsor a child who is facing a special need like Karunia!
As you exchange letters, send photos and offer encouragement in Jesus’ name, your love will bring hope to a child with special needs that will last a lifetime.
Words by Vera Aurima and Zoe Noakes; photos by Daniel Robson; A version of this article was originally published by Compassion Australia.