Dear friends with big hearts,
We are Nirnay and Lalrinmawii, and we’re the parents of Aryan, our sweet little boy who just turned 3. It’s really hard for us to write this, but we want to share what our dear boy has been going through.
Nearly a year ago, we saw Aryan struggling to do simple things that other children do easily. We hoped it was nothing serious, but after a lot of doctor visits, we were told Aryan has Spinal Muscular Atrophy type 2.
SMA is a tough illness. It slowly takes away Aryan’s ability to move his muscles and even makes it hard for him to breathe. When we learned about his condition, our hearts broke and we felt lost, not knowing what the future would hold for our little boy.
To help Aryan, his doctors first gave him a gene therapy drug called vesemnogene.
Aryan’s Treatment Plan
- Vesemnogene, a gene therapy drug, delivers a healthy copy of the missing gene to his body. This helps his body make the protein needed for muscle strength and movement.
- His doctors now recommend adding another treatment called risdiplam as part of a dual therapy approach.
How the Treatment Helps
- Vesemnogene helps by giving Aryan’s cells the gene they are missing, so his body can start making the important SMN protein that keeps his muscles and nerves healthy.
- Risdiplam works differently: it helps Aryan’s body use a backup gene (called SMN2) to make even more of the SMN protein.
- By using both treatments together, Aryan can get the most SMN protein possible, which gives him a better chance to move, grow, and stay healthy.
Why Risdiplam Is So Important
- Risdiplam is the only SMA treatment that can be taken by mouth at home, making it much easier for Aryan.
- It helps not just the nerves in the brain and spine, but also muscles and other organs throughout the body.
- Studies show that risdiplam can help children with SMA gain strength, reach new milestones.
- Aryan needs to take risdiplam for at least 2 years, and it is very expensive, costing ₹60 lakhs per year.
Why We Need Your Support
- We are raising ₹2 Crore for Aryan’s risdiplam treatment along with his physiotherapy and other medical expenses, which is crucial for his continued progress.
- Every contribution helps give Aryan the chance to grow up stronger and healthier.
We are not giving up. We don’t want money to decide what happens to our little boy. That’s why we are asking for your help.
Your donation can make a big difference for Aryan. With your help, he can get the treatment he needs to get better. We want Aryan to be able to smile, play, and enjoy his childhood, just like other kids.
Please give with open hearts and share Aryan’s story with your friends and family.
Thank you for caring about Aryan and our family. Your support and prayers mean so much to us. With your help, we believe Aryan can have a happy future.
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.
