A Parent’s Voice: Living with NF1 in India
Автор: Dakshama Health
Загружено: 2025-12-01
Просмотров: 53
This heartfelt testimonial shares the journey of little Shanvi, a child diagnosed with Neurofibromatosis Type 1 (NF1)—a genetic condition in which tumours grow on nerves anywhere in the body. In her case, NF1-PN has caused deep, painful tumours that affect her ability to carry out simple daily activities. At barely school-going age, even walking is painful for her. At a time when she should be learning, playing and enjoying childhood, she struggles with physical discomfort and limitations no child should have to face. Despite these challenges, her parents continue to fight every day, doing everything they can to manage her condition and give her the best care possible. But they cannot do it alone. They need support. They need a system that ensures children like her receive the right care at the right time.
Children like Shanvi need help. We request policymakers, partners and all stakeholders to support the inclusion of NF1 under the National Policy for Rare Diseases (NPRD). Families living with NF1 face immense emotional and financial burden.
These families need support. These children deserve hope.
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