Do you remember Karunia, a beautiful little girl from Indonesia with Apert syndrome? A few years ago, she confidently claimed she was beautiful like her mother. And yes, she was right!
More than that, Angel, her mother, raised her to know she is loved and enough just as she is. It’s been five years since we last caught up with Karunia. Today, she is a vibrant and confident 13-year-old girl who defies societal expectations and stereotypes with her unwavering self-assurance.
Come say hello!
Love overcomes the stigma of Apert syndrome
Karunia with her mom, Angel, and her dad, Chandra.
Born with Apert syndrome, a condition characterized by the premature fusion of certain bones in the skull, fingers and toes, Karunia radiates positivity and resilience, thanks to the nurturing environment provided by her family.
“I love to spend my time with my family. We usually walk around our village in the afternoon just to enjoy the view and the fresh air,” Karunia says.
Karunia is loved by many, especially her friends at the Compassion centre.
“She is a girl with great self-confidence; it is because she lives in a family that supports her 100 per cent,” says Lian, a staff member at Karunia’s Compassion centre.
Physically, Karunia carries distinctive features associated with Apert syndrome. However, Angel, her mother, has instilled in her the belief that beauty comes in many forms, emphasizing the uniqueness that sets her apart.
Growing confidence in motherhood
Even though Angel worked hard to instill a sense of self-confidence in her daughter from a very young age, life has not been easy. Angel remembers the doubts and struggles she faced in the early months after Karunia’s birth.
“When Karunia was born, I felt there was something wrong, but I didn’t understand that yet,” she says.
Angel only found out about her daughter’s condition a week after giving birth. Her husband, Chandra, insisted on questioning the doctors because he was worried about Angel’s weak condition.
But, despite the unique challenges, Karunia’s presence gave Angel a new title—mother—that she had so desperately desired. Becoming a mother was a profound and transformative experience filled with a spectrum of emotions for Angel, and the joy accompanying the transition was unparalleled.
“I love being a mother, and I love my daughter. My husband is very supportive. I thought being a mother was hard, but it is not always hard after I dove more into this role. There are lots of joys in being a mother,” Angel says.
The power of a strong community
The knowledge and understanding of her role as a mother became more emphasized when Angel joined the Survival program at the local Compassion centre a few months before she gave birth. Angel got a lot of valuable information from the program. She was affirmed, motivated and supported by everyone, especially other parents.
“Everyone in the program motivated me, so I didn’t give up on Karunia’s condition. I learned to love Karunia even more deeply from all that support,” says Angel.
Today, as a teenager with Apert syndrome, Karunia sometimes gets bullied by strangers or those who don’t know her. It is the opposite of how her family and her friends treat her at the Compassion centre.
“Every day, I keep telling her that she is beautiful, and I love her. I keep motivating her to be confident and always remember that she has us as her family who love her deeply,” Angel says.
A little sibling for Karunia
For Angel, raising a child with a disability isn’t always easy—it needs at least two people to work together to make it happen. Angel and Chandra’s relationship radiates warmth and stability. Their harmonious relationship is evident in the laughter that echoes through the house. In fact, they have been standing firm since day one when Karunia came into the world.
With all the positive things Angel and Chandra created in their family, nine years after Karunia was born, Angel was confident to have a second child.
“After Karunia was born, I wasn’t sure that I would add another child, because I wanted to just focus on her. But her spirit to live and survive has changed me totally. She taught me how to have self-confidence,” Angel says.
Karunia loves her little brother, Keis. She enjoys spending time with him at home. “He is my brother who I really love, and I know he loves me too,” Karunia says.
Serving others with God’s strength through Apert syndrome
Though her first years were hard, Karunia is a beautiful young lady who loves going to school and attending the Compassion program activities. In addition to her activities at school and the Compassion centre, she actively serves as a tambourine dancer at her church.
“I do enjoy serving at my church as a tambourine dancer; it’s always lovely to serve the Lord together with my friends,” Karunia explains.
Angel’s success in raising Karunia cannot be separated from the community and the support the family has received through the Compassion centre.
“Through the programs at the Compassion centre, I was greatly helped to understand my responsibility as a mother for my daughter,” says Angel. “I understand that Karunia is a blessing for me and my family. I believe that when God gave her to me, God Himself gave me the ability to raise her.”
Through Compassion’s Survival program, new moms in poverty gain community, courage and confidence.
Help support young moms like Angel today.
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Written by Vera Aurima with Laura Phillips
