Stay cheerful despite the pain of fragile skin

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

Every morning, before sunrise, 10-year-old Muhammad Raed Mohammad Shanwaz begins his day with extraordinary perseverance.

While most children his age struggle to wake up for school, Raed has to get ready as early as 5am – not to complete homework or play on the phone, but to go through an important routine: taking a shower, treating wounds and applying a layer of cream to protect his fragile skin.

Born with Epidermolysis Bullosa (EB), it refers to a group of rare genetic conditions – the skin is very fragile, prone to blisters and ulcers.

They are also known as 'butterfly babies', due to the fragility of their skin, delicate like butterfly wings.

Despite his circumstances, Raed continues to live life with a smile and high spirits.

His mother, Ms. Nurzeehan Abdul Halim, 34, was very impressed with his fighting spirit that never faded.

“Since childhood, he hasn't let pain stop him.

"Every day, after going through her routine, she still starts her day with laughter and chatting with our family, as if she wasn't in pain," the mother of three shared with Berita Minggu (BM).

The Telok Kurau Primary School students have also been given some relaxation in school rules to help them adapt to school.

Among them, Raed was exempted from the rules and allowed to wear long pants and slippers to protect his skin.

The school allowed him to leave class five minutes early to avoid congestion in the corridors.

This is because if there is any minor collision or friction on Raed's skin, it can cause painful blisters due to the delicacy of his skin.

Ms Nurzeehan also shared that before Raed started school, a discussion was held between the school, the principal and Dr Mark Koh , Head and Senior Consultant at the Dermatology Service, KK Women's and Children's Hospital (KKH).

This is so that staff and students at the school understand the situation. However, being in a public school still has its own challenges.

Many people often mistake EB for eczema without realizing that even a light touch can cause Raed's skin to tear. But Raed has learned to face everything with an open heart.

He realized that people might be looking at him, but instead of feeling offended, he responded with a smile.

"Since he was little, we taught him that other people are also suspicious and just curious. One analogy I tried to explain to Raed is that if we ourselves see someone who is different from others, for example someone with a short stature, we will also notice that person and that is a normal attitude," said Ms. Nurzeehan, a care coordinator.

Apart from the unwavering support from his family, Raed and Ms. Nurzeehan also received help from Debra Singapore, a patient support group for individuals with EB.

This organization plays a vital role in connecting them with medical advice, peer parent support, and resources that help in managing this condition.

For Ms. Nurzeehan, the journey of raising Raed was not an easy one, but she did not go through it alone.

Her husband plays a big role in ensuring that they both can provide the best for their child.

"My husband and I share responsibility for Raed's care. We support each other emotionally and physically, ensuring he gets the best care while looking after our own well-being as parents," said Ms Nurzeehan.

Outside of school, Raed is just like other children his age. He enjoys playing soccer with his cousins, joking with his family, and not letting his illness define his identity. Although she avoids swimming to protect her skin, she doesn't feel left out.

Her biggest challenge now is learning to be more independent – ​​doing small tasks like applying cream herself.

For Ms. Nurzeehan, efforts to raise awareness about EB are not just about educating the community, but also about building a more caring and understanding world for children like Raed.

"Many people mistake EB for eczema, but it is much more serious. Even the slightest touch can cause the skin to tear if you are not careful. If more people understood, maybe children like Raed wouldn't have to face so many difficult looks or questions."

"I hope that one day, awareness will lead to acceptance and EB children will be seen as they truly are - strong, resilient and full of life," commented Ms Nurzeehan.

Since he was a child, he didn't let pain stop him. Every day, after going through his routine, he would start his day laughing and chatting with our family, as if he wasn't in pain.

For the original article on Berita Harian, click here.