Cuộc chiến đơn độc chống lại căn bệnh ác tính cùng con

bộ phim tài liệu mới có tựa đề "I Want You Be Ordinary" (tạm dịch: Mẹ mong con sống đời bình thường) ghi lại cuộc đời của Zou Yang và cậu con trai 9 tuổi của cô khi phải vật lộn với căn bệnh rối loạn di truyền hiếm gặp gây ra các khối u lành tính khắp cơ thể.

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At age 9, Manman has already outlived his doctors’ predictions (dự đoán) by six years.

The symptoms (triệu chứng) appeared when he was just four months old. Initially (ban đầu), his condition drew inconsistent diagnoses (chẩn đoán không nhất quán). While some doctors suggested the patches were mere birthmarks (vết bớt), others suspected meningitis (viêm màng não) or developmental abnormalities (rối loạn phát triển)  in the brain.

But six months later, an MRI confirmed the worst: Manman had a growth in his brain, a manifestation of neurofibromatosis (biểu hiện của bệnh u xơ thần kinh), a rare genetic disorder that causes tumors (khối u) throughout the body.

“I was so relieved to finally get answers,” says Zou, a single mother from the central Hubei province. “But there’s currently no cure for the disease. One doctor predicted that Manman wouldn’t live past the age of 3.”

The 37-year-old spoke with Sixth Tone while on her way to Beijing with Manman to attend the premiere of “I Want You to Be Ordinary,” a documentary (phim tài liệu) released ahead of World Rare Disease Day, observed every year on the last day of February.

The film aims to shed light on (làm sáng tỏ) their journey and the broader challenges faced by individuals grappling with rare diseases in accessing essential treatments (phương pháp điều trị thiết yếu).

Produced in collaboration (hợp tác) with Tencent Charity, the Illness Challenge Foundation, and Bubble Home — a nonprofit that helps neurofibromatosis patients and their families, where Zou also volunteers — the film documents Zou and Manman’s life over four months, starting from the previous summer.

Despite the emotional toll of reliving her tumultuous (đầy biến động) experiences, Zou hopes to help raise awareness about neurofibromatosis, a disease often overlooked in China. She also aims to draw attention to and support a community of over 800,000 individuals affected by the disease across the country.

Isolated

The impact of neurofibromatosis extends beyond the complex treatments and financial burden (gánh nặng tài chính) it imposes. Patients still encounter discrimination (phân biệt) and isolation in social, educational, and employment spheres.

For instance, because of his condition, Manman was initially rejected by a local kindergarten. Determined to secure his enrollment, Zou gave up her job in real estate and passed teacher qualification exams so she could work in the kindergartens, and stay close to Manman.

...But most of the time, Zou, as a single mother, finds herself alone — a common scenario in the rare disease community, where the initial family support often wanes over time.

For Shi, the documentary’s producer, Zou and Manman’s journey may not represent (đại diện) all 20 million rare disease patients, many of whom frequently grapple with poverty and despair.

“Manman’s story, however, is like a fairy tale for patients and families dealing with rare diseases. We hope their story can help raise awareness for the 20 million patients in China with rare diseases,” says Shi.

source: Sixth Tone,