Rare disease: 10-year-old girl's father seeks Delhi govt's help
New Delhi: "I don't want money, all I want is a ventilator for my 10-year-old child. My heart sinks when I see her sufferings. Is it my fault that she has a rare genetic disorder Farber disease. I can't afford a private hospital now. Can the government help me out, said a grieving young tall man Wali Ahmed. Wali's daughter Nashrah is admitted to Apollo and is on the ventilator support.
However, the bills of the hospital have already burnt a hole in his pocket in just a few days compelling him to seek government's intervention in seeking a ventilator at a government hospital.
Nashrah was only 1.5 years of age when she had persistent fever and had difficulty in speaking. When Wali took her to LNJP hospital little did he know that the doctors would tell him that her daughter is suffering from rarest of the rare Farber disease. Wali, working in an event management company in Delhi, has been running from house to hospital since then. "I appeal to the Delhi CM Arvind Kejriwal to help my daughter. I have been to several government hospitals like Ram Manohar Lohia, AIIMS and GTB. Some of them have written slips to help us but none provided a bed with a ventilator. Am I supposed to see my daughter suffering? I love her, she is my life," Wali said.
Wali, a resident of Ajmeri gate in Delhi, said when Nashrah developed complications, LNJP told him that she needs ventilator support, the girl was rushed to Apollo then. However, the expensive treatment of the girl at Apollo has led the father to knock doors of the government hospitals. On September 16, Wali was blessed with another girl at LNJP, and the same day they were asked to move Nashrah out of LNJP for a ventilator.
Farber's disease is an autosomal recessive, lysosomal storage disorder that typically affects infants. An individual affected by disease will commonly experience swollen and painful joints, small lumps of fat in the subcutaneous layer and a hoarse voice. Additionally, exposed individuals may have an enlarged liver or spleen, impaired breathing, and various developmental delays.
