Care for people with Rett Syndrome and their families

Nov 24.2022 | Spread Happiness and Love Together With You

People with rare diseases and their families are faced with long-term economic stress and in need of everyone’s support. Rett Syndrome, a genetic neurological disorder that occurs mostly in females at an incidence rate of about 1 in 12,000, is the rare disease of all rare diseases, affecting about 130 people in Taiwan. The symptoms include overall body degeneration, behavioral decline, repetitive hand movement e.g., hand washing, wringing, gripping, and sticking out tongue, panting, sleep disturbance, walking instability, loss of speech, incontinence and so on. There is no cure at the moment. It can only be controlled by drugs, and rehabilitation and physiotherapy can be applied to delay degeneration and lifelong special care is required.

To help with their mobility, Chang Yung-Fa Charity Foundation funded assisted devices for 20 people with Rett Syndrome through Taiwan Rett Syndrome Association (TRSS). The Foundation chairman Wu Jing-Ming led a delegation to visit the beneficiaries. Mr. Zhang living in Wenshan District, Taipei City, now works on manual odd jobs and is the TRSS’ long-standing case. Mr. Zhang’s eldest daughter with a history of stroke and hemophilia is currently housed in a care center. Mr. Zhang’s third and fourth daughters both have Rett Syndrome, and his wife stays at home taking care of them. Their family finance in a very tough situation, they are listed as a low-income household. The two daughters started to show symptoms of Rett Syndrome around one year of age, have no ability of speech, and their physical degeneration has gotten more severe by the day. The fourth daughter also suffered from severe scoliosis.

The Foundation colleagues and chairman Wu Jing-Ming had an amicable chat with Mr. Zhang and got to know his current family situation and the daughters’ use of assistive devices besides offering them consolation funds and everyday supplies. Mr. Zhang was grateful that the Foundation constantly reached out when they were stuck in solemn troubles and this time the Foundation came back with assistive devices, he felt the warmth and support from society knowing that he was not alone and that he would be empowered to face the days ahead.