Two children were born with large patches of peeling skin due to ichthyosis.pink

For the past 14 years, Ms. Nguyen Thi Dao (born 1979) and her husband, Mr. Tran Van Tung (born 1973), from Coc Ngang village, Pham Ngu Lao commune, Kim Dong district, Ha Nam province, have endured immense pain and hardship. Their two children were born with dry ichthyosis, a rare skin condition that causes their skin to peel off in large patches, leaving them in constant discomfort.

Xúc động câu chuyện cô bé mắc căn bệnh hoại tử da nuôi ước mơ thành bác sĩ chữa bệnh cho em trai - Ảnh 3.

The Pain of Two Children Suffering from a Rare Disease

Visiting the family of Mr. Tung and Ms. Dao, many people cannot help but feel heartbroken seeing their two children afflicted by this strange disease. The children’s skin peels off in large pieces, sometimes cracking and bleeding, causing them intense pain and making them cry so much that their voices become hoarse.

Ms. Dao, with tears in her eyes, recounts how she and her husband have not had a full night’s sleep for over a decade, constantly tending to their children’s needs and pain. Their first child, Tran Thi Phuong Thao, was born in 2005 with unusually shiny skin that peeled off in patches and oozed fresh blood. Despite numerous visits to the hospital and consultations with doctors, they were told that Thao had a rare form of dry scaly skin with no known cure.

The Birth of Hope and Further Heartbreak

In 2008, the couple welcomed their second child, Tran Thi Quynh Chi, who was born healthy and without any signs of the condition. This brief respite gave them hope, and they believed that their first child’s condition was a one-off anomaly.

However, in April 2014, when their third child, Tran Hong Minh, was born, the family’s hopes were dashed again. Minh was born with the same skin condition as his sister, his body covered with wrinkled, dry, and cracked skin. The disease also caused his upper eyelids to turn up, forming a frighteningly red circle around his eyes.

Coping with an Incurable Condition

Ms. Dao describes the daily struggles of managing her children’s condition. With no cure available, they make monthly trips to the Central Dermatology Hospital to get prescribed medications. Daily, Ms. Dao applies skin-cooling lotion to prevent severe chapping and cracking. In the hot summer months, the children’s skin cannot sweat properly, turning red and causing extreme discomfort, necessitating up to 10 baths a day. In dry weather, their skin cracks and bleeds, causing even more pain.

Despite her condition, little Phuong Thao yearns to go to school. When she was five, her mother took her to kindergarten, but the other children were scared of her appearance, calling her “ghost.” This led to Thao being unable to attend school, increasing her longing for education.

A Mother’s Dedication and a Father’s Sacrifice

Ms. Dao, who used to work as a seamstress, has been unable to work since the birth of her children, dedicating all her time to their care. The family survives on Mr. Tung’s income as a motorbike taxi driver in Hanoi, where he works tirelessly to afford his children’s medicine and support the family.

Despite the limited funds, Ms. Dao applies medication sparingly, focusing only on the most severely cracked areas. The family expresses immense gratitude for the support they receive from neighbors and visitors who come to offer help and inquire about their well-being.

A Glimmer of Hope

The story of Ms. Nguyen Thi Dao and her family is a poignant reminder of the strength and resilience required to care for children with rare, incurable diseases. Their journey is filled with pain and challenges, but also with love, hope, and a community’s support. The Graves family continues to hope for better days when their children can live more comfortably and their dreams, like Phuong Thao’s wish to go to school, can come true.

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