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The Tong Wei Family

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Tong Wei

Tong Wei came from China with his family to help his son have a better life using cyclodextrin.

Zhang Ye

Zhang Ye, Tong Weibing's mother, fights NPC alongside her husband as they pursue cyclodextrin together.

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Tong Weibing

Tong Weibing was diagnosed with Niemann-Pick Type C at the age of six. In 2016, he was enrolled in the Vtesse Phase II/III trial in the US to fight NPC using cyclodextrin.

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Family Life

"[When my son was eight years old,] we received an invitation and brought him to the US to participate in a clinical trial."

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Niemann-Pick Type C

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Early Symptoms

Tong Weibing lacked motor coordination and had difficulty walking, paying attention, and moving his eyes.

Previous Treatment

Tong Weibing's family traveled to Europe to buy medication for him, but were unable to get it. He remained, for the most part, untreated.

Symptom Progression

Tong Weibing started to have seizures and to fall down when walking; he also began to choke and to get tired easily.

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Cyclodextrin

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Vtesse Phase II/III Trial

Tong Wei and Zhang Ye heard about the Vtesse cyclodextrin trial from fellow China NPC community member, Jiao Yunlong.

Coming to the US

Tong Wei and his family found the different language and culture in the US – as well as the higher cost of living – challenging.

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Hope for VTS-270

Tong Weibing's parents are hopeful that cyclodextrin treatment will improve his NPC symptoms.

Hope for the Future

Tong Wei and Zhang Ye hope their family's action will contribute to a better future for other NPC patients and, one day, to a cure.