Foundation genesis

The motivation why I, Nibedita Saha, youngest daughter of Shri Chittaranjan Saha and Shrimati Nistarini Saha wife of Mr. Krishna Kanta Saha and bereaved mother of “Kanishak Binayak Saha” willing to do this project in order to keep our beloved son Kanishka Binayak Saha’s life- line on, who left this world at the age of 9 years and 7 months due to a rare metabolic disorder, Primary Hyperoxaluria (PH).

Since I have been born in Midnapore, West Bengal, India I am very much interested to do some noble works for my home country as well as to put away other children adolescent and adult persons from this rare deadly enzyme-linked metabolic disorder. This disorder is not only observed in children but also it may remain undiagnosed for years in adolescents and adults.

This can be detected by screening the patients. This type of treatment is not available till date in India and other countries outside India. The Mayo Clinic in USA is pioneer in this field, who rendered immense help for treatment of the child Kanishka in collaboration with the doctors of the Czech Republic. The Mayo Clinic, USA truly believe that Kanishka’s wish has been fulfilled because Prof.Dr. Dolezel of Czech Republic found out about Primary Hyperoxaluria (PH) testing in the US, and now people on both sides of the world are working together to learn more about this disease. While under treatment Kanishka showed that type of compassion for others and thus setting an example that inspires people and help this world. The Mayo Clinic has agreed to render assistance, to set up diagnostic screening and associated medical advice to this foundation.

Primary Hyperoxaluria (PH) is a rare metabolic disorder in which high quantities of oxalic acid are produced in the body resulting in Kidney stone and renal failure especially in children. Sometimes the oxalic acid thus formed is circulated in the blood stream in the form of small crystals which are difficult to eradicate from the body. These crystals affect both kidneys and liver. The patient needs transplant of both liver and kidney and also regular dialysis. However, till now there is no established medical protocol to treat this enzyme-linked metabolic disorder. The available treatment is not only costly but also extremely painful to the patient. Moreover, this treatment fails to cure PH patients leading ultimately to their death. Though, this cases of PH is extremely rare, may be one in a million. To fight the disease extensive research and cooperation between research centers working on PH is essential.