Butterfly Children

Butterfly Children

Butterfly Children
05:25

Butterfly Children

Butterfly children: The story of the boy with the fragile skin

Between the Lines

A butterfly in flight is one of nature's most beautiful sights. But the term "butterfly children" belies a cruel reality. Those born with Epidermolysis Bullosa, or EB, are called “Butterfly Children” because their skin is as fragile as a butterfly's wings. Any slight contact or friction can lead to skin trauma. Activities as mundane as holding a pencil or walking 20 meters to catch the school bus often result in excruciating blisters and sores.

We enter the lives of four families living with EB in Singapore. Ira Jain has been struggling with the condition all through childhood and her insecure teenage years. But she is also a budding poet and scientist who wants to contribute to the pharmaceutical industry, and bring awareness to the condition. Three-year old Raed has one of the most severe cases of EB in Singapore. But just as you see his blisters, you also see his open smile. His parents share their struggle in caring for him, as well as their hopes for a kinder future.

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