Save Baby Kiara: Urgent Help Needed for SMA1 Cure

Hello well-wishers !

This is our donation page for 8-month-old baby Kiara Rawat, born on February 3, 2024, diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). All she asks is one gene. Can you help us get it for her?

I am Utpal Kalita and I live in New Jersey, USA. Kiara's father is my elder brother Deepak Kalita's colleague and friend. I am helping Kiara's parents to raise the funds required to save their little angel's life. They have very limited financial support in Faridabad, India, where Kiara is now located and hospitals are ill equipped to treat such genetic conditions. Kiara's family is fundraising in India through their local crowdfunding platforms, but they have tried very hard but have only raised 2% of their total goal. They really need our help, and the clock is running out for Kiara as each day passes.

SMA is a terrible disease, a rarest of rare genetic disorder that affects 1 in 10,000 kids worldwide. Kiara is missing one gene in her body that is required to make a very important protein. That protein keeps her nerve cells active, and without it, they wither away and die. She will have a lifespan of 6 months to 2 years depending on the progression of her condition.

On the surface, she looks like a normal happy child, but inside her condition is killing her nerves and muscles one by one. As the disease progresses she will not be able to move her hands and legs, sit up, crawl, hold her head, or do any of the things normal babies do. Her breathing will be labored; stomach muscles will give way, causing food to go back up to her lungs; and she will choke on her own spit and stomach fluids. Once the disease kills a particular nerve cell, we lose all function in that part of the body and this is irreversible. No amount of treatment given after the nerve cells die will help.

We have some hope. She currently has limited movement in her legs and has some breathing issues, but is right now breathing and feeding on her own. The 1.7 million dollar treatment called Zolgensma is available in the United States. This treatment, given to her now, could be a potential “cure”. As time passes, the effectiveness of the treatment will reduce. So we need to reach our goal within the next 2 months.

We appeal to your human side. You have the opportunity to save this beautiful baby. Please open your heart so we can reach our goal NOW and save her life.

Please help us spread the word. All our social media links and locations are available on Link tree - https://linktr.ee/savekiara Every share, donation, encouraging word will help build our campaign up.

The Primary purpose of this fundraiser is to make Zolgensma available to Kiara. Payments from gofundme will be made out to the pharmaceutical company (Novartis) or their authorized subsidiary in lieu of purchasing this life saving treatment and making it available to Kiara. We may also require to make payments to the hospital for pre and post procedure care, as well as any care required for monitoring Kiara as part of the evaluation and treatment.

Please show your support for this GoFundMe !