Five Members Suffer from a Degenerative Paralysis Disorder

In the remote banjar of Kubu Salya, in Sukawana Village, Kintamani, Bangli, I Gede Mangun (Red Shirt, Center) of the Cempaka Putih Foundation, sits with the family of Ketut Locong (far right). Five male members of the family suffer from a disease the people in the village call Lumpuh Layuh, a debilitating and degenerative paralysis disorder, with an onset of about nine years of age and resulting in the loss of the ability to walk, speak, and eventually death. With help from other villagers, Cempaka Putih Foundation is striving to help this family transport the afflicted members from their remote village to Sanglah Hospital to receive proper diagnosis (please check back for further information) and treatment, as well as provide clothing, medicine, food and education, none of which the family can afford on their own. Thanks to recent donations of medicine, funds, a wheelchair, and volunteers, the family’s living situation has started to improve, and the youngest afflicted son, Putu Budiasa (12) is finally able to attend school for the first time (donations are needed for Putu’s tuition fees).

The Remote Location Makes Transport to Medical Facilities Difficult

The oldest son, Wayan Sukada, whose disease has progressed to where he can no longer walk or speak, is shown to the left in front of the family home being helped by his father. Several healthy village members volunteer for the arduous three hour hike necessary to transport Wayan and his brothers to the nearest paved road where they can be taken by car to a medical facility

Substandard Living Conditions

The kitchen area of the family’s one room dwelling (shown at right). It is dangerous and unsanitary for a large family such as this, several members of which need constant care, to live in such cramped surroundings without a separate area for cooking. The youngest members of the family face the dangers of serious burns when playing in the family home. Donations are needed to buy and transport the necessary supplies for village volunteers to help build a safer and more sanitary house for the family, with a separate or outdoor kitchen and adequate water supply.

Onset of Paralysis

The two oldest sons Komang Artana and Wayan Sukada shown at left in the family dwelling. Both sons’ faces are paralyzed by the disease, and they are not longer able to speak or care for themselves. The family is unable to provide adequate care, and they must be transported out in order to receive medical attention and supplies.

Receiving Treatment

The youngest son, Putu Budiasa, shown to the right in Sanglah Hospital receiving the much needed treatment that finally improved his condition enough to attend school.

Donations are still very much needed for the continued treatments which are necessary for the afflicted members of this family in order to maintain and try to improve their quality of life, for Putu to continue his education, and for the entire family to receive building supplies, medical supplies, clothing, and food.

Six year old Putu Malini, who suffers from severe congenital psoriasis, is shown here sleeping next to her younger sister. We would like to offer thanks to Trisha Sertori and the Jakarta Post for the wonderful article of Wednesday, March 7, 2007 (Page 21) and for raising awareness of Putu’s condition and the extreme poverty and hardship faced by many families in Sukawana Village and the Bangli Regency.

Please check back for more information on Putu’s condition, and for information on the many other families receiving aid in Sukawana Village.