The average life-span of a Niemann patient is 20 years.Those willing to provide financial assistance to the famly can write firstname.lastname@example.org.
Even though the disease is genetic, in Debaneel's case it is pathogenic which makes his ailment extremely rare.A DNA test conducted at NIMHANS in Bangalore detected Debaneel's ailment.
His family was asked to take him back to Kolkata since the disease was untreatable.
In this case, it took years to detect Debaneel's ailment.
His family has launched a desperate search for medicines, including those which are still under trial in the USA.Now under treatment at the Institute of Neurosciences Kolkata (INK), Debaneel's ailment was detected last year.
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