Raising a Daughter with Apert Syndrome – in Indonesia

May 8, 2024 | News

By: Compassion Australia

As Mother’s Day approaches, Compassion is shining a spotlight on those mums who are called to raise children with special needs like Angel, from Indonesia, and her teen daughter, Karunia.

When Karunia was born with Apert syndrome, Angel doubted her daughter would survive, and doubted her own abilities as a mother. But with the support of her husband and the Compassion center, she has raised Karunia to be a teenaged girl with a strong identity and self-confidence.

Apert syndrome is a condition characterised by the premature fusion of certain bones in the skull, fingers, and toes. 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, emphasising the uniqueness that sets her apart.

Karunia radiates positivity and resilience, thanks to the nurturing environment provided by her family.

“She is a girl with great self-confidence; it is because she lives in a family that supports her 100%,” says Lian, a staff member at the Compassion center.

Overcoming the Challenges

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 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.

Despite the unique challenges, Karunia’s presence gave Angel a new title – mother – that she had desperately desired.

“I love being a mother, and I love my daughter. There are lots of joys in being a mother,” Angel says.

Angel gained a lot of support after joining the Survival initiative at a Compassion centre, a few months before she gave birth. There she was affirmed and 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.

A Nurturing Environment

As a teenager with Apert syndrome, Karunia sometimes gets bullied by strangers or those who don’t know her. In contrast, she finds acceptance and support at her Compassion centre, and from her family and friends.

“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 explains.

“Through the programs at the Compassion center, I was greatly helped to understand about 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”.