"Mere saath aisa kyu hua?" were the heart wrenching words spoken by Mrs. Shital Bhatkar when her son was diagnosed with Niemann Pick C, a deadly and incurable disease. She could have crumbled, but she chose to fight. She went to many doctors across the length and breadth of India, but it was hopeless. There were only a handful of Niemann Pick C cases in India. During all this tension, a thought clicked her, "We were educated and had access to the internet. That is why we were able to know something about this horrible disease.
Imagine the condition of poor people who can't even afford a diagnosis. What would happen to them?"
She unfortunately lost Aarya, in 2015…3 months before his 7th birthday but she didn't crumble and started the WITHAARYA foundation. Very soon did the buzzing streets outside KEM hospital fill with large queues of people waiting for the DON GHAAS, an initiative by WITHAARYA foundation to start, which we visited on 22nd July 2018 with our schoolmates. DON GHAAS provides the needy with a wholesome meal (roti, banana, vegetable, rice) only for Rs.10. While our colleagues, Disha and Vihaan, were distributing the food, the others stumbled upon some people in the queue who needed funds for the treatment of their dear ones. WITHAARYA aims at spreading awareness about Niemann Pick C, and other rare diseases. It supports diagnosis and treatment of victims of such diseases. It also runs the DON GHAAS programme.
DON GHAAS distributes more than 200 food packets daily and approximately 7500 food packets monthly. Just like WITHAARYA, there are many more NGO’s willing to help. These NGO's main aim is to bring visibility and understanding about rare diseases to every corner of the world.
Mrs. Shital Bhatkar - Founder - WITHAARYA foundation
Some NGO’s helping people regarding medical treatments are:
· JEEVANJYOT FOUNDATION - 02224153453
· V CARE FOUNDATION - 9821949401
· MAKE A WISH FOUNDATION - 9821222506
There are many more NGO’s that you can look up about on the internet too!
If you know someone who is suffering from such rare diseases, here are a few tips we recommend:
· To share the scarce knowledge that we already have;
· To explore what more could be done or developed to advance knowledge of rare diseases at a global level;
· To connect rare disease stakeholders across borders;
· To create synergies with other stakeholders to mutually exchange knowledge and expertise;
· To keep you busy, thinking about it makes it worse. Indulge into an activity that interests you;
· Last but not the least, don't lose hope!
Together, we can work towards making this world a safer place. Creating awareness about these NGO’s can be extremely beneficiary. A small act by you may help a family from losing a dear one. Share the link of this message to as many people as you can. You can bring a smile on many more faces by just a click of your finger 😊
A blog by the ‘New Hope Group’
Urav, Disha, Ira, Niyati, Vihaan
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