“Every parent dreams of giving their child a future filled with joy, growth, and laughter. For our 2-year-old daughter, Jenisha, that dream is shadowed by the relentless grip of Spinal Muscular Atrophy (SMA) Type 3, a condition that has made even the smallest movements an uphill battle.
We are reaching out to you with a heartfelt plea to join us in giving Jenisha the chance at life she truly deserves.” - Chaitali Patil (mother)
My name is Chaitali Prathamesh Patil, and I’m writing this with a mother’s heart full of hope, love, and desperation. My 2-year-old daughter, Jenisha, has been diagnosed with a rare and life-altering disease called Spinal Muscular Atrophy (SMA) Type 3.
SMA is a genetic disorder that damages the nerve cells in the spinal cord, weakening the muscles needed to walk, move, and even breathe.
In Type 3 SMA, children may learn to walk but slowly lose the ability over time. It’s a progressive condition, one that only gets worse without treatment.
When Jenisha was born, she was the light of our family. We named her after a goddess, and our home was filled with joy.
But at around 9 months, we noticed something was wrong, she couldn’t stand or walk like other children her age. We took her to a neurologist, and after many tests, we received the heartbreaking diagnosis.
Today, Jenisha cannot walk on her own. She needs support even to stand. Her knees and ankles are in constant pain. She uses a walker, but even that is difficult. She’s too young to fully understand what’s happening, but as her parents, we watch her struggle every day.
"My daughter Jenisha dreams of becoming a doctor one day. As parents, our dream is even simpler, to see her walk, run, and live pain-free.” - Prathamesh (father)
The only treatment available is an oral medicine called Risdiplam, which helps increase the protein needed to keep her muscles working. This drug has to be taken daily and is not made in India, it must be imported. Jenisha requires 14 bottles for one year, and the total cost comes to approximately ₹5 crores (5,00,00,000).
We are a small family of five, living in Uran, Navi Mumbai. I take tuition classes, and my husband works as a driver. Together, we earn less than ₹1 lakh a year.
We’ve already sold jewellery and borrowed money just to cover initial expenses and therapy.
The doctor at SMART Multidisciplinary SMA Clinic has advised us to begin the Risdiplam treatment immediately before the condition progresses further and affects her breathing or swallowing.
Alongside, Jenisha is undergoing daily physiotherapy, which also costs money. Without treatment, the pain will only increase, and her movement will continue to decline.
We are now in urgent need of ₹5 crores for Jenisha’s medicine. We request your support to help save our daughter’s future. Your contribution will go directly toward buying the medicine, physiotherapy, and her ongoing medical care.
Please donate and help our Jenisha walk again. Help us give her the future she dreams of.
Donate now and share my daughter’s story to help her complete her treatment.
How to Help?
Donate: Please click the donate button to donate and help my daughter overcome Spinal Muscular Atrophy (SMA) Type 3.
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माझे नाव चैताली प्रथमेश पाटील आहे आणि मी हे एका आईच्या आशा, प्रेम आणि निराशेने भरलेल्या मनाने लिहित आहे. माझी २ वर्षांची मुलगी जेनिशा हिला स्पाइनल मस्क्युलर अॅट्रोफी (SMA) टाइप ३ नावाचा एक दुर्मिळ आणि जीवन बदलणारा आजार असल्याचे निदान झाले आहे.
SMA हा एक अनुवांशिक विकार आहे जो स्पाइनल कॉर्डमधील चेतापेशींना नुकसान पोहोचवतो, ज्यामुळे चालणे, हालचाल करणे आणि श्वास घेणे देखील आवश्यक असलेले स्नायू कमकुवत होतात.
टाइप ३ SMA मध्ये, मुले चालायला शिकू शकतात परंतु कालांतराने हळूहळू क्षमता गमावतात. ही एक प्रगतीशील स्थिती आहे, जी उपचारांशिवाय आणखी वाईट होते.
आताच देणगी द्या आणि माझ्या मुलीची कहाणी शेअर करा जेणेकरून तिला तिचा उपचार पूर्ण करता येईल.
कशी मदत करावी?
देणगी द्या: माझ्या मुलीला स्पाइनल मस्क्युलर अॅट्रोफी (SMA) टाइप 3 वर मात करण्यासाठी आणि मदत करण्यासाठी कृपया देणगी बटणावर क्लिक करा.
शेअर करा: माझ्या मुलीची कहाणी तुमच्या मित्रांसोबत आणि कुटुंबासोबत शेअर करा आणि त्यांना व्हॉट्सअॅप, इंस्टाग्राम, फेसबुक, ट्विटर आणि इतर सोशल मीडिया चॅनेलवर तिच्या संघर्षांबद्दल शेअर करण्याची आणि पुन्हा शेअर करण्याची विनंती करा.
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.