Nia is one of a kind in her village. She’s not one of a kind because she was the first in the village to be born with Apert syndrome. And she’s not one of a kind because she looks different than other little girls her age.
She’s one of a kind because she and her family, without even knowing it, are teaching their community about acceptance and true beauty.
Apert syndrome is a rare congenital disease that affects the structure of the skull and face, as well as the arms and legs. For Nia, this meant she was born without fingers and toes.
In her remote village of Bongkudai in North Sulawesi, East Indonesia, there are no resources to care for a child with Nia’s condition. It’s understandable that her parents were uncertain how to handle the situation.
A Protective Father
Nia’s father Candra works as an unskilled laborer. Neither he nor his wife Angel had access to a quality education. When faced with the news of his newborn baby’s disease, Candra decided to hide the truth from Angel.
“I cried when I saw my baby for the first time. Sad and disappointed is what I felt,” said Candra.
Angel, Nia’s mother, said, “My husband, parents and all my family members were hiding the real condition of my baby. Anytime they gave my baby to me to breast-feed, they wrapped her in a blanket. She wore gloves and socks so I wasn’t able to see her hands and feet.”
Knowing he couldn’t keep Nia’s condition a secret forever, Candra asked the pastor from the church to help him deliver the truth.
“My body was shivering upon hearing the confession of my husband. I just cried and wondered why God had entrusted this to me,” Angel said.
Overwhelmed with Nia’s physical needs, Angel and Candra didn’t know how to properly take care of her.
Angel recalled, “In the early stage of her life, Nia suffered some pain, such as high fevers, breathlessness, excessive sweating and insensibility.”
They also faced a community who didn’t understand. Having never seen a child with Apert syndrome, people in the village responded differently to Nia. Some children were even scared or would run away.
But things began to change when Nia was a year old. She and Angel were enrolled in the Child Survival Program (CSP) at our local church partner Gereja Gerakan Pentakosta Alpa Omega (ID233).
It Takes a Village
Helping a child like Nia was new to the staff at ID233 but they were determined to do all they could for her and her family.
“We are committed to helping her. There is a hope in her,” said Stevan Pesak, the coordinator at the child development center.
Through classes and home visits, Angel learned a lot about parenting, which gave her a better understanding of Nia’s situation. And through monthly medical checkups and early interventions, the Child Survival Program helped Nia to grow healthy.
Grace Tulangow, the secretary at the child development center, explained, “In 2012, CSP supported Nia to have hand surgery to create fingers [on her right hand]. CSP paid the fees for medicine, and the rest of the surgery fee was covered by a government program for poor families.” This year, Nia will undergo another surgery on her left hand.
But most important, Angel and Candra began to think positively about Nia and accept her condition.
Grace added, “We can see how Nia’s parents have changed from not accepting the fact of their daughter’s condition to accepting who their baby is with all of their heart.”
Spreading True Beauty
Now nearly 7 years old, Nia is continuing to develop emotionally, physically, intellectually and spiritually in our Child Sponsorship Program.
According to Grace, “She is a brave girl and able to adjust to anything around her.”
Nia’s not so different from her friends. She dreams of being a singer when she grows up. She loves to color and run and is learning to read and write. She’s even excelling in class.
Agnes Singel, Nia’s teacher, explained, “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.”
But Nia’s positive attitude and personality really make her uniqueness shine. Though she is physically different from other children, she knows she is beautiful.
“I am beautiful like my mother,” she said. “I love to play with my friends at school and at the center. I love to lead prayers or singing.”
The support of her parents, family members and center staff members have made Nia a self-confident person. This brave girl has taught her family and friends about self-acceptance and gratitude. And because of that, their community shines a little brighter.
“My daughter has taught me to be a strong person,” Candra said. “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.”
