Dede Sunandar Tells of His Great Struggle for a Child with Williams Syndrome

"The first child is about to enter the 5th grade. The second one, just pray for him, he still can't speak because he does have a condition from God," said Dede while talking about the development of his two children. Despite the challenges, he remains grateful for everything that has been given to him.

Dede then explained in more detail about the condition experienced by his second child. “Because he indeed, when I flashback to the past, has a disease from Allah SWT, given to my family to elevate our status, Williams Syndrome. So the heart to the lungs narrowed from the age of three weeks or three months, a long time ago. Now he is seven years old and in good health. Just asking for prayers so he can speak soon,” he said. 

Williams Syndrome itself is a rare condition caused by the loss of a small segment of chromosome 7. This disorder affects physical and mental development, and is often accompanied by health issues such as heart and vascular disorders. Nevertheless, children with Williams Syndrome often have high social traits and are cheerful.

Becoming a parent of a child with special needs is certainly not an easy task. Dede expressed that one of the biggest challenges is managing the sleep pattern of their second child. “The challenge is that his sleep pattern has changed. He sleeps during the day and stays awake at night. My husband and I have become thin because we take turns watching the child,” he said with a faint smile, recalling the struggles they have faced. 

Dede and his wife's daily life is also full of struggles. "While I work at the restaurant, coming home at 1-2 AM, he is still awake. Sometimes I stay with him until 3-4 AM, I get sleepy, I leave, and my wife takes over. The sleep pattern has changed, it feels like our bodies are worn out from staying up late. We also have to follow his wishes," he continued. Although it is exhausting, they continue to strive to provide the best for their child.

However, it is not uncommon for Dede and his family to face difficult moments. "Sometimes we don’t realize that if he is not obeyed, he feels alone, upset, and shouts," he said. According to him, this becomes part of the dynamics that must be accepted with sincerity.

When asked if he feels that trials come in succession, Dede humbly replied, “Not really, Bang. Because back in 2010, I was a cleaning service, looking back, in 2013 I worked with Kang Sule and then at a restaurant. In 2014, I was elevated in status by marrying Karin, and in 2015, I was blessed with a child, Arjuna. In 2015, I received Super Dede with my first child,” he said.

Trials came when the second child was born with difficult health conditions. However, he believes that all these tests are a form of God's love. “In 2016, still Super Dede, I was given the trial of having another child born with Down Syndrome from birth. We accepted it with all our sincerity, we made efforts until 2000 something, but Allah hadn’t given it yet. Then, we had a daughter,” added Dede.

His youngest child had to enter the PICU and NICU twice. “He was in the PICU NICU for just two weeks during COVID. He came out in normal condition, thank God. In fact, he surpassed the intelligence of his older brother. So he could talk earlier, and could take care of his brother even though he sometimes felt scared,” he reminisced.

For Dede, every trial he faces is always followed by extraordinary wisdom. “His older brother is taken care of fiercely by him. So I just enjoy it. It’s not a series of relentless trials, but it’s like after the trials, there’s something beautiful for Dede’s family,” he concluded with gratitude. Through this journey, Dede inspires many people to keep being patient and sincere in facing life’s tests