jyoti Shinde,Editor
कहते हैं बच्चा भगवान का दिया दिया हुआ सबसे खूबसूरत तोहफ़ा होता है..वो हैं तो ज़िंदगी गुलज़ार.. ना हो तो ज़िंदगी बेकार। यहां हम एक एसी मासूम का जिक्र करना चाहते हैं जिनका नाम गरिमा है और वो सिर्फ 4 महीने की है। और वो हरियाणा सोनीपत की रहने वाली हैं।
गरिमा Spinal muscular atrophy (SMA) नाम की ख़तरनाक बीमारी की शिकार हो गई हैं। बेबी गरिमा के इलाज के लिए 17 करोड़ के भारी भरकम राशि की जरुरत है।
लेकिन कहते हैं ना कि बूंद बूंद से घड़ा भरता है। आपकी एक छोटी सी मदद मासूम गरिमा की जिंदगी को बचाने में मददगार साबित हो सकता है। ऐसे में बिना देर करते हुए आपसे जो बन पाए मदद कीजिए..अकाउंट नंबर पर डिटेल दी गई है।
Hello Mam/ sir,
I’m Nisha Sankhwar working in Indian Drug Regulatory. I want to sensitize you with one current situation.
Baby Garima, 4 months old daughter of my colleague Sh Sandeep Kumar and Arti, resident of Sonipat Haryana was born on 30.01.2023. She is suffering from SMA type 1 disease which is the rare disease globally. Spinal muscular atrophy (SMA) is a genetic (inherited) neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose a specific type of nerve cell in the spinal cord (called motor neurons) that control muscle movement. Without these motor neurons, muscles don’t receive nerve signals that make muscles move. The word atrophy is a medical term that means smaller. With SMA, certain muscles become smaller and weaker due to lack of use.
Her doctor has prescribed medicine Zolgensma costing approx. 17.5 Cr which is not approved in India so it’s unavailable. The drug needs to be imported from USA on per patient basis. Zolgensma is also provided to the affected patients under “The Novartis Gene Therapies Global Managed Access Program (MAP)” which is designed to provide a potential pathway for patients seeking such a treatment, provided the required eligibility criteria are met and in accordance with applicable local laws and regulations. It is a randomised system choosing few patients amongst the global patients pool for the treatment. So, what about baby Garima? Whether she will get the drug or not? Shall her parents leave her in pain and agony and helplessness and be deprived of their parenthood?
Therefore, in order to save the life of baby Garima, her parents are trying to pool money to purchase Zolgensma for baby Garima to save her life.
As Small helping hands can do wonders. In our honest intent to do so, I request you to please contribute the money whatever generous amount you can afford to save her life. Please contribute from your side.
Also please spread the word for contribution to your family, friends, relatives, colleagues, college, office, Associations etc for contribution. Remember no amount is small and no blessing is less. Please do your part 🙏🙏🙏
