Note - The collected amount is completely transferred to mother Krishnaveni, the collected amount will be used for medicines,hospital checkups and Risdiplam syrup(6 lakhs).

Dear Sir/Madam

My 6-year-old daughter, Shiva Sahasra, and 3-year-old son, Mahaveer, have been diagnosed with a life-threatening disease called Spinal Muscular Atrophy (SMA). 

This is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons).

Brief about Spinal Muscular Atrophy:

 SMA is a genetic disorder characterised by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). It is caused by a loss of specialised nerve cells, called motor neurons, that control muscle movement. The muscle weakness usually worsens with age. There are four types of spinal muscular atrophy. The types differ in age of onset and severity of muscle weakness.

SMA mostly affects small babies and children from a very early age. Babies with the most severe type of SMA – type 1 – do not even live to see their 1st or 2nd birthday. Children with type 2 and 3 live up to teenage and adulthood; however, they are confined to a wheelchair and suffer from scoliosis of the spine, poor lung function, nutrition-related problems, frequent illnesses due to a weak immune system, and many other challenges.
Approved drugs

• FDA-approved drugs

Spinraza and Zolgensma are not yet available in India
Zolgensma (Gene therapy) can be imported, and it's a one-time injection by the FDA, and it costs 16 crores.

• DCGI-approved drugs

Risdiplam (Evrysdi) by ROCHE pharmaceuticals for SMA has been launched on July 1st, 2021, in India. This Medicine should be given for a lifetime. The Indian price of Restiplam (EVRYSDI) is approximately 70 lakhs per year.

SCAN THIS QR CODE.

My Kid’s health is getting critical day by day. 

Please save my little Children. I have heard that children help you hold a chance towards heaven, but I cannot bear to witness my child’s suffering. I cannot afford to lose them.???????
Thank you from the bottom of our hearts for your generosity, your compassion, and your belief in the power of community.

Share On Donate Now