CTS News Magazine-Seeing the Rare Vitality

“Welfare Home” Breaks Ground 

After 12 years of planning, the first welfare home for rare diseases (RD) in Asia was finally built in February 2020. In the future, it will be divided into areas, including a multi-purpose classroom, a healing garden, and a vegetable garden, where families with RD can have access to rehabilitation, consultation, and respite.

Six-year-old Jia-Wen was diagnosed with the rare disease Treacher Collins syndrome at birth. She suffers from hearing impairment and has difficulty breathing and swallowing, leaving her father, Mr. Chen, who has Jia-Wen in his old age, extremely upset. Optimistic Jia-Wen is the driving force that keeps her father going. They are very excited about Welfare Home. Mr. Chen hopes that his daughter will be able to visit Welfare Home after its completion.

16-year-old An-An suffers from both Noonan syndrome and Neurofibromatosis, resulting in a congenital heart condition, visual and hearing impairment, and cognitive ability stopping at the age of two. An-An’s mother, Mrs. Wu, is always by his side to look after him. She provides for herself by making handicrafts and handmade soaps. When Welfare Home is officially in operation, she hopes to pass on her skills to other RD families so that more parents can look after their children and make a living at the same time through their crafts. 

Psychological Support for Families with Rare Diseases

Facing a rare disease can be a long and bumpy journey of uncertainty. The stress of the caregiver sometimes leads to many psychological problems. When it happens, in addition to the assistance from a family psychologist, a community of patients can also be another source of support for families with RD.

TFRD supports nearly 50 patient groups, one of which is Taiwan Rett Syndrome Association, located in Kaohsiung. Sometimes mothers of the patients meet for therapy classes, and sometimes they make handmade soap together, sharing their feelings and worries and working together to overcome difficulties.

Shang-En is now completely deaf and has only weak eyesight due to a tumor compressing his nerves. Faced with the stress caused by the disease, Shang-En needs a channel to express his feelings. TFRD appoints a social worker to visit Shang-En's home on a regular basis so that he can gradually open his heart, voice out his problems, and restore his smile.

★Watch it online: https://www.youtube.com/watch?v=AKx-TyzYN68

Translator: David Lee (Becker Muscular Dystrophy)