It all started when he was just 9 months old. A mother’s instinct was preparing me for something big, but I didn’t want to believe it. I never wanted to believe that my child was going through constant weakness and breathing issues. I didn’t want to believe when the doctors said my little one had delayed motor development.
I never wanted to believe the reports that mentioned my baby boy has Spinal Muscular Atrophy (SMA) Type 2.
My name is Neha Rastogi, and I am the mother of Preyas Rastogi, a 9-year-old child fighting a rare and progressive genetic neuromuscular disorder.
Because of SMA, Preyas suffers from severe motor delay, progressive muscle weakness, and reduced muscle tone. His muscles continue to weaken over time, making even the simplest activities difficult. Sitting without support is a challenge for him, and his coordination and reflexes are extremely limited.
Over the years, his condition has slowly affected his body in many ways. Due to prolonged muscle weakness, both of his hips are now dislocated, which is a common but painful orthopaedic complication in children with SMA. Doctors have advised urgent hip reconstruction surgery, with one surgery already scheduled in March to prevent further deformity, pain, and complications.
Preyas’s diagnosis was confirmed through SMN1/SMN2 MLPA genetic testing, which revealed a homozygous deletion of Exons 7 and 8 in the SMN1 gene. This means the gene responsible for muscle survival is missing, causing the muscles to gradually weaken. He is currently under treatment at Sir Ganga Ram Hospital, where doctors are closely monitoring his condition.
To slow the progression of the disease, doctors have prescribed Risdiplam, a life-saving therapy for SMA patients. This medication helps improve the production of the missing protein needed for muscle function. However, it must be taken lifelong and without interruption. The cost of this treatment alone is ₹6,00,000 every month, which is far beyond what our family can afford.
Preyas is our only child. My husband runs a small business, and I stay at home as Preyas’s full-time caregiver. His condition requires constant care, medical visits, and emotional support.
We have spent many lakhs on genetic tests, consultations, medications, and supportive treatments. We have used our savings, borrowed money, and taken help from relatives to continue his care. But now, the financial burden has become impossible for us to manage alone.
Despite everything he goes through, Preyas remains incredibly brave. He loves to study and dreams of becoming a doctor one day. He says he wants to treat children who are sick so they don’t have to suffer like he does.
As parents, we hold on to that dream. We want to give our son the chance to grow, study, and live a life with dignity.
But to make that possible, he urgently needs continued access to Risdiplam therapy and the required orthopaedic surgery. Without timely treatment, SMA can cause irreversible muscle loss, worsening disability, and severe complications.
Today, we are reaching out to you with hope in our hearts. We cannot fight this battle alone.
Your support can help ensure that Preyas receives the life-saving treatment he needs to keep fighting this disease.
Please come forward and donate now on ImpactGuru to help our little warrior continue his treatment and move closer to the life he dreams of.
You can also help Preyas by sharing his story with as many kind hearts as possible, willing to help.
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.