“I am beautiful like my mother”

Meet this precious young girl with Apert syndrome changing perspectives on physical difference
  • By: Laura Phillips

Precious Karunia bubbles with life. Her sweet smile and joyful demeanor are magnetic.  She is resilient in a world that resists difference.  She is strong in the face of adversity. She embraces each day in her home of South Bongkudai with a joyful song on her lips— running and laughing with friends whimsical and care free.

Though she is physically different from other children, Karunia is confident in her beauty—radiating from outside and in. 

But life is not always so easy for her.

An initial shock

Karunia was born with a congenital disease called Apert syndrome—a craniofacial and limb anomaly disease, affecting the face, skull, arms and legs. When Karunia was born, her parents—Candra and Angel—were completely shocked. Their newborn baby was not what they expected.

Karunia sits with her mom and dad on a blanket in the hills.

“I cried when I saw my baby for the first time. Sad and disappointed is what I felt,” said Candra, Karunia’s father.

Out of fear, Candra decided to hide the truth that his baby suffered from Apert syndrome from his wife. But it wasn’t a secret he could keep forever. Candra decided to tell his wife the truth with the help of the pastor of a local church. 

Psst! Scroll down to watch a video of Karunia’s story.

“My husband, parents and all my family members were hiding the real condition of my baby. Any time they gave my baby to me to breastfeed, they wrapped her with a blanket, and she wore gloves and socks so I wasn’t able to see her hands and feet,” says Angel. “My body was shivering upon hearing the confession of my husband. I just cried and wondered why God had entrusted this to me.”

Challenge of the early years

Candra and Angel felt overwhelmed with the task of caring for a baby whose condition they knew little about. But by the grace of God, Angel and Karunia were enrolled in the local Compassion centre’s Survival program one year after she was born.

With help from the Survival program, Karunia was growing healthier and stronger day by day, with regular medical check-ups each month. She was also given access to a government program that allowed her to undergo a surgery to create fingers on her right hand.

Karunia sits in her room reading a letter. Her windows are surrounded in pink curtains.

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Day by day, Angel found a new confidence in her parenting journey through the program. She discovered a healthier understanding of her baby’s condition.

“I started to feel strong,” she says. “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 from God.”

Bullies and growing pains

After receiving life-changing care from the Survival program, Karunia was enrolled at her local Compassion centre in Bongkudai village, Bolaang Mongondow, North Sulawesi. But amidst the blessing of this new school journey came a new set of challenges.

Karunia stands with her school uniform on, crossing her arms and smiling infront of her school.

“There are some who bully Nia,” says Candra. “They mock her saying, ‘Hey, it’s Nia the deformed girl!’ I say, ‘You are God’s gift. When they bully you, you can say to them that you are God’s gift and not a creation of any man.’

With time, the truths learned at home began to take root in Karunia’s heart.

“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,” she says.

“I am beautiful like my mother.”

A firm identity

Through her short years in school, Karunia has started to thrive. With the help of her family and her Compassion staff, she is gaining a healthy perspective of herself and her identity in Christ—a beloved daughter of God.

Karunia and her parents pose in the fields

As she grows more into herself unapologetically, Karunia is also changing hearts and perspectives.  Simply by being herself, she is teaching her friends about self-acceptance and true gratitude for the challenges of life.

“My daughter has taught me to be a strong person,” says Candra.

“She is my own flesh and blood, and we have to take care of her for as long as God gives us life, because God has a purpose for her.”

Karunia poses with her friends in a group picture.

Today, Karunia is a true leader. She loves leading prayers and singing at her Compassion centre. She is brave.  She has a spice for life and is a fierce lover of her friends. One day, she dreams of becoming a singer.

Her confidence in her identity in Christ is a concrete knowledge held well beyond her years. She has, undeniably, touched the hearts of each person in her midst—a testimony that reflects God’s kingdom.


Made in God’s image from Compassion Canada on Vimeo.

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Words by Laura Phillips and Vera Aurima

Photos by Daniel Robson

Video by Tom Anlezark and Daniel Bracken