WithAarya is a trust which supports kids suffering from rare disorders in form of supportive care, also providing financial support for poor and needy. Post losing our Aarya to this dreadful disorder, have stared working with local hospitals to also help pediatric patients and families coming from poor background with assistance required at all levels !!!!
What started as a simple beginning for helping our own ‘AARYA’ has now taken a form of a trust which principally works for patients diagnosed with ‘NIEMANN-PICK’ disease [NPD] and their families.
DONATIONS to WithAARYA will be exempted under section 80-G of the income tax act. for more information, donations or inclinations to help in anyway
Post losing our Aarya to this dreadful disorder, WITH AARYA along with the key areas mentioned above, have stared working with local hospitals to also help paediatric patients and families coming from poor background with assistance required at all levels !!!!
Taking the above initiative forward, WITHAARYA now have extended the work to support poor patients and relatives coming in KEM hospital and Tata Cancer hospital. We have started a one full meal service to serve these people who otherwise are struggling to meet ends through the treatment phase.
WITHAARYA now does not remain limited to just Nieman Pick disorder extending support to all ailments.
WithAARYA’ is a trust which supports kids suffering from rare disorders in form of supportive care, also providing financial support for poor and needy.
NIEMANN-PICK disease is one of the rarest, fatal, genetic disorders, which can surface anytime after a child’s birth and has no cure.
It is a lipid storage disorder that results from the deficiency of a lysosomal enzyme, acid shhingomyelinase, which affects the child’s ability to breakdown the fats in the body. This leads to harmful amounts of fats to accumulate in the vital organs of the body such as brain, spleen, liver, lungs, and bone marrow. The accumulation of these harmful fats slowly and progressively destroys the vital organs causing neurological, respiratory, liver & blood related disorders. The slow damage of these vital organs is reason for their untimely death.
It is progressively deteriorating condition, that no parent can bear to see his or her child in.
What is the Cause?
Mutations in genes cause Niemann-Pick disorder. Genetic counseling and genetic testing is recommended for families, who may be carriers of defective gene.