Palliative Care, Need of the Hour

Here is a parent from Agra in Uttar Pradesh, requesting the mercy of President of India for mercy killing or euthanasia of his 6 children suffering from Canavan, the rare neurological disease/disorder.  Affluent individuals, institutions, leaders, political systems, everything is in place, but none there to provide succor to this family so as to wipe their tears and take away their lament?  Community based Voluntary Palliative Care comprising emotional, social and medical interventions to improve the quality of life of these children, is the only solution seems to be appropriate in this scenario when the disease is beyond cure in medical science.    

Canavan disease is a progressive, fatal neurological disorder that begins in infancy. It is caused by an inherited genetic abnormality: the lack of an essential enzyme causes deterioration of the white matter (myelin) in the brain, thereby preventing the proper transmission of nerve signals.

Symptoms of Canavan disease vary, but generally include rapidly increasing head circumference, lack of head control, reduced visual responsiveness and abnormal muscle tone such as stiffness or floppiness.  Children with Canavan disease cannot crawl, walk, sit or talk.  Over time they may suffer seizures, become paralyzed, developmentally delayed or blind and have trouble swallowing. Deafness may also result……

kv hamza,
Gen. Secretary, DNipCare
www.dnipcare.org
09891008356