Three-year-old boy suffers from rare thick, scaly skin disease

by Nur Shurah Hassan Published on Berita Harian on 9 March 2025

When Ms. Nurdiyanah Jam Hari first saw her fourth child, Rafif Afkari Abdul Hadi, she was surprised to find that his skin was tight and shiny.

At first, he didn't understand what was happening.

The doctor then explained that Rafif was a collodion baby, a condition in which babies are born with a wax-like membrane that will peel off in the first few weeks of life.

Recalling the experience of receiving Rafif in 2021, her husband, Mr. Abdul Hadi Zainoordin, said that due to his other conditions, doctors quickly cleaned the baby and took him to the intensive care unit.

"I couldn't lift him up and had to pray for him when he was alone in his little bed," he explained.

A few days later, they received further information – Rafif was confirmed to have Congenital Ichthyosis – a rare disease that affects the body's ability to shed dead skin cells.

"I was overcome with a variety of emotions. Fear, sadness, but also determined to give Rafif the best life," said Ms. Nurdiyanah, a mother of five boys aged between eight months and 16 years.

Rafif is the fourth child.

Ms. Nurdiyanah, 36 years old, a preschool educator, wondered what had happened.

"My children were previously healthy, why is Rafif different? What did I do wrong?" he asked himself.

Fortunately, Mr. Hadi, 38, a care coordinator, became his main source of strength.

"Alhamdulillah, my husband has strong faith and spirit. He is the one who eased my worries all this time. I admit I was more emotional because at that time, we were not sure how to overcome the situation," said Ms. Nurdiyanah.

He could not bring Rafif home for two weeks after giving birth to him.

What Is Congenital Ichthyosis?

Congenital Ichthyosis is a genetic disorder that causes the skin to become very dry, scaly and easily cracked.

The disease is inherited in an autosomal recessive manner, meaning a child receives a mutated genetic copy from both parents.

This condition occurs in about one in 300,000 births worldwide.

The disease has no cure, but treatment can help manage its symptoms.

Patients need to undergo a strict skin care routine, including intensive moisturization, special baths and certain medications to reduce discomfort and the risk of infection.

Test of endurance

Ms. Nurdiyanah and Mr. Hadi had to change their lives to take care of Rafif.

Rafif's skin requires special moisturizer every few hours to prevent extreme dryness which can cause pain and cracks. More time is allocated to give Rafif a bath.

The skin needs to be sufficiently moisturized to become softer, thus helping to remove dead skin cells more easily. This can take up to an hour.

Environmental temperature is also an important factor. Hot weather can make things worse, causing Rafif to become easily dehydrated; while too cold weather can cause his skin to be more sensitive and easily peel. Every night, they ensure Rafif sleeps comfortably with controlled air humidity so his skin doesn't dry out.

Rafif often woke up because of itching and pain, causing his parents to lack sleep and be tired for long periods of time, especially when he was still a baby. "Sometimes I cry next to him because I can't stand to see him scratching his skin until it bleeds," said Ms. Nurdiyanah.

In addition to physical challenges, they also face social stigma. "Many people don't understand this situation and often give strange looks or ask hurtful questions," said Ms. Nurdiyanah. According to him, some say Rafif's skin is like a reptile; some think Rafif's disease is contagious, when it is a genetic disorder.

There are even parents who forbid their children from playing with Rafif because of a misunderstanding about his condition.

"This kind of attitude adds emotional stress to families who are already struggling with various daily challenges."

"As a parent, you are your children's first teacher. They learn by observing how you behave."

“Show love, and they will follow your example, spreading empathy and understanding wherever they go,” said Ms. Nurdiyanah.

High Treatment Costs

Another big challenge is the cost of treatment. Special moisturizing creams, medications and regular visits to specialists are expensive.

"We have to save on many things to ensure Rafif gets the best treatment," said Mr. Hadi.

Initially, they spent hundreds of dollars on trial and error using creams, moisturizers and medicine needed to adapt to Rafif's condition.

They also need to make some home renovations, such as installing an air humidifier system, to ensure Rafif is more comfortable.

In addition, they also buy special clothes that are not too rough on their skin and ensure that all products used are free of chemicals that can worsen the situation.

Ms. Nurdiyanah also often looks for other families who suffer from similar skin diseases. He found an Australian who sold a vest for babies that allowed him to put two ice packs in the left and right pockets, to keep Rafif's temperature stable. The vest alone costs around $90.

In addition to financial challenges, emotional challenges are also a big test. Fatigue from lack of sleep affects the mental well-being of Ms. Nurdiyanah and Mr. Hadi.

"There were times when I almost gave up, but I reminded myself that Rafif needed us to stay strong," said Ms. Nurdiyanah.

Future Hopes

Although the journey was difficult, Ms. Nurdiyanah and her family persevered.

They are now active in a support community for parents who have children with rare skin diseases.

He shared his experience with Ichthyosis on social media and also sought advice from those who had gone through similar situations.

"I want Rafif to grow up with self-confidence, without feeling inferior or marginalized because of his skin condition," he said.

He shared his fears for Rafif's future when he faces the realities of the world, especially without defense from him or Mr. Hadi.

"I'd be lying if I said I wasn't worried. I always think about his future... if others can accept him and take care of him like we raised him with love."

"I know his journey will be more difficult, but I hope Rafif continues to have the courage to face the twists and turns of life," said Ms. Nurdiyanah, holding back tears.

They also hope that more awareness about Congenital Ichthyosis can be created in society.

With better understanding, families like theirs will not feel left out or face painful stigma.

"We are not asking for sympathy. We just want the community to better understand our son's condition.

"Don't let negative words control your emotions, Allah tests you because of His love," said Ms. Nurdiyanah, full of gratitude.

For the original article on Berita Harian, click here.