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於2017-12-29 14:03:24發表 (閱讀次數:312)
TFRD's First Micro-Film "Love‧Roll Call"

This is the first micro-film of TFRD since its establishment 18 years ago. Through images, the aim is to send the message that “what is rare is not the disease, but the one-and-only vitality.”

In the film, the leading role imagines that he is the one who participates in a relay race, the one who helps massage his mother’s back, and the one who wears high-heels… All these selves are but a fantasy. However, these roles are only fantasies. In reality, each role is the true self who is helpless. Director Shi came up with this idea through his observation of patients.  Before filming, to understand patient life, Director Shi and the screenwriter as well as ten patients held a deep discussion.  The purpose was to allow this film to use the patients’ perspective to display their inner voice and a roll call was used to point out patients’ helplessness and predicament.

Real life rare disease patients who performed in the movie include:  Ching-hsuan, who has Osteogenesis Imperfecta (commonly known as brittle bones disorders), managed “design” to bring people together; Jia-chi, who was teased by classmates because of her rare skin condition (Ectodermal Dysplasias), chose to return to school to help students who shared similar experiences with her; Jou-hsuan, who has Spinal Muscular Atrophy, was somewhat disappointed, when speaking of one day the medicine to cure her disease was invented; Hsin-chiao’s  mother has accumulated countless, heart-broken nights in exchange for the happy face of her daughter, a patient with Mitochondrial Defect. Wan-ping, who has Nemaline Rod Myopathy, found it strenuous to talk. Although it took at least three hours to go to school, she still talked in a feeble voice, saying that she “would like to finish her studies, learn music composition and compose a song for herself.”

There are over 250 kinds of rare diseases and 14,000 rare disease families in Taiwan.  Although over 70% of them are still waiting for a chance for treatment, they do not easily give up.

Watch on YouTube: https://www.youtube.com/watch?v=JNb2ixvPuL8 (English Subscribe)

Translator: Rachel (Wilson's disease), Reviewer: Nicky