“How do I see my baby boy suffering? I just want to hold him and tell him that everything will be okay.” - Hitesh Chavda, father.
Currently: Baby Vivan is receiving Risdiplam and medication and undergoing physiotherapy until he can receive the life-saving drug Zolgensma.
At barely 3 months old, my little boy Vivan was diagnosed with SMA type 1 at AIIMS in Delhi. The rare genetic disorder (Spinal Muscular Atrophy- type 1) is weakening his tiny muscles as he loses his ability to move, eat and even breathe. Now, at 6 months old, my baby boy has very slight movements and needs a nebuliser to breathe!
How will SMA type 1 affect little Vivan?
- Spinal Muscular Atrophy (SMA) is a rare genetic disease that affects the motor nerve cells in the spinal cord, leading to progressive muscle weakness and loss of movement.
- SMA Type 1 specifically impacts children like Vivan, who may never be able to sit, stand, or walk without assistance.
- Without treatment, the condition worsens over time, affecting vital functions like breathing and swallowing.
What is the miraculous cure for Vivan?
The only hope for Vivan in the form of a life-saving treatment called Zolgensma, a one-time gene therapy that can halt the progression of SMA and give him a chance to thrive. However, this treatment comes at an overwhelming cost in crores of rupees, our family is going to need support that we desperately wish for to save our little Vivan.
How will Zolgensma help baby Vivan?
Zolgensma, the groundbreaking gene therapy that targets the root cause of SMA. It has shown remarkable results in helping children regain muscle strength and achieve developmental milestones.
However, the treatment must be administered as soon as possible to maximise its effectiveness. Vivan is receiving Risdiplam and undergoing physiotherapy as of now. But… time is critical for baby Vivan, he needs the life-saving drug before he turns 2 years old!
“As parents, it breaks our hearts to see our child suffer, and we are determined to do everything in our power to save him.” - Hitesh Chavda, father.
We have exhausted all our savings and resources and so we are turning to the kindness and generosity of people like you. Your generosity is the blessing we seek to save our dear boy. Help Vivan now.
How can you help my baby?
Donate to his treatment.
By donating, you help ensure that my baby receives the treatment that saves his life.
Share his story with your family and friends.
By sharing his story with your loved ones and friends, you will help to amplify his voice to those who care and are willing to donate.
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आप मेरे बच्चे की मदद कैसे कर सकते हैं?
उसके इलाज के लिए दान करें।
दान करके, आप यह सुनिश्चित करने में मदद करते हैं कि मेरे बच्चे को वह उपचार मिले जो उसकी जान बचाए।
अपने परिवार और दोस्तों के साथ उसकी कहानी साझा करें।
अपने प्रियजनों और दोस्तों के साथ उसकी कहानी साझा करके, आप उसकी आवाज़ को उन लोगों तक पहुँचाने में मदद करेंगे जो उसकी परवाह करते हैं और दान करने के लिए तैयार हैं।
Disclaimer -
SMA is a progressive disease that causes muscles to weaken over time. To prevent further deterioration and slow the progression, Vivan urgently needs the drug Risdiplam to preserve muscle function only if it is prescribed by the doctor, While the fundraising for Zolgensma is underway, starting Risdiplam immediately is a critical step to safeguard the child’s life and preserve muscle function.
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.