“I am praying every day that my son can one day live without pain.” - Bhargavi Sai, mother.
My little angel Sai Chirag will soon turn 2. But unlike most kids his age, life has been a battle for his tiny body. Our lives changed ever since December 2025. My son has Spinal Muscular Atrophy (SMA) type 2, a rare genetic disease that slowly takes away a child’s muscle strength.
While other children his age are learning to stand, walk, and run, my son struggles just to move his tiny legs. All that he can do is sit, roll, and reach to hold objects but he cannot stand on his own, and finds it difficult to stand up, a delayed gross motor skill. He is at a high risk of having breathing or swallowing complications over time.
We found out about his condition through genetic testing. It shattered our world. The doctors told us that every day that passes without treatment means more motor neurons are lost forever. But, they also gave us hope that with the right medicines and gene therapy, Chirag can gain strength, achieve milestones, and live a fuller, more independent life.
How can my son heal?
The doctors have advised starting long-term disease-modifying treatment with risdiplam and one-time gene therapy Vesenmogene along with physiotherapy and regular follow-ups. My son also requires ongoing monitoring for respiratory, nutrition/swallowing, and orthopedic issues (contractures/scoliosis risk) as part of standard SMA care.
The treatment is considered time-sensitive so delay can reduce potential improvement.
How Vesemnogene Works:
Vesemnogene is a gene replacement therapy. It works by delivering a healthy copy of the missing SMN1 gene into the child’s body. Once administered, the body can start producing the essential protein needed for muscle function!
✔ It is a single-dose, one-time treatment
✔ It helps halt further muscle damage
✔ Early administration gives a child a chance at a better, more independent life
Time is extremely critical but the cost of Vesemnogene gene therapy is approximately
₹2 crores ( USD 1,25,000).
My husband is the only earning member of our family, and our son needs continuous caregiving and therapy support. We have been trying to manage the funds and medical costs with savings and support from family and friends. Even loans, rented housing and spending around ₹8 lakhs. But, the treatment is costing us everything and more.
We cannot do this without your support.
“Our only dream is to see our son gain strength, achieve age-appropriate motor milestones like standing and walking and soon attend school normally.”
As a parent, it breaks me that I cannot give him this chance on my own. It is your support which can turn his struggle into a story of hope.
Your generosity can help stop this disease from taking away our son’s future.
How can you help my son?
Donate to his treatment.
Share his story with your family and friends.
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ನನ್ನ ಮಗನಿಗೆ ನೀವು ಹೇಗೆ ಸಹಾಯ ಮಾಡಬಹುದು?
ಅವನ ಚಿಕಿತ್ಸೆಗೆ ದೇಣಿಗೆ ನೀಡಿ.
ದಾನ ಮಾಡುವ ಮೂಲಕ, ಅವನ ಜೀವವನ್ನು ಉಳಿಸುವ ಚಿಕಿತ್ಸೆಯನ್ನು ಅವನು ಪಡೆಯುವುದನ್ನು ಖಚಿತಪಡಿಸಿಕೊಳ್ಳಲು ನೀವು ಸಹಾಯ ಮಾಡುತ್ತೀರಿ.
ಅವನ ಕಥೆಯನ್ನು ನಿಮ್ಮ ಕುಟುಂಬ ಮತ್ತು ಸ್ನೇಹಿತರೊಂದಿಗೆ ಹಂಚಿಕೊಳ್ಳಿ.
ಅವನ ಕಥೆಯನ್ನು ನಿಮ್ಮ ಪ್ರೀತಿಪಾತ್ರರು ಮತ್ತು ಸ್ನೇಹಿತರೊಂದಿಗೆ ಹಂಚಿಕೊಳ್ಳುವ ಮೂಲಕ, ಕಾಳಜಿ ವಹಿಸುವ ಮತ್ತು ದೇಣಿಗೆ ನೀಡಲು ಸಿದ್ಧರಿರುವವರಿಗೆ ಅವನ ಧ್ವನಿಯನ್ನು ವರ್ಧಿಸಲು ನೀವು ಸಹಾಯ ಮಾಡುತ್ತೀರಿ.
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.