Aasmika’s Fight Against Spinal Muscular Atrophy (SMA)

Aasmika’s Fight Against Spinal Muscular Atrophy (SMA)

https://www.impactguru.com/fundraiser/help-aasmika-das?fbclid=IwY2xjawHeBD1leHRuA2FlbQIxMQABHbFBeCY3ipcewzSSAMzgBAt3uE3NPK0BEiv5tcQG-wCPIT_rjTdfSVyjBA_aem_g-Xw6IyZOD5bTNYjK8g_Jw

Spinal Muscular Atrophy (SMA), a rare genetic disorder, has profoundly impacted the life of seven-month-old Aasmika Das, the beloved daughter of Suvongkar Das. Despite her spirited efforts, Aasmika cannot use her muscles effectively. Tasks like gripping objects, raising her arms, sitting without support, rolling on her back, or even swallowing food are insurmountable challenges for her. SMA robs her of basic developmental milestones, leaving her unable to crawl, walk, hold her head steady, or breathe effortlessly.

The only hope for Aasmika lies in a miraculous gene therapy called Zolgensma, priced at an astronomical ₹16 crore (approximately $2 million). Without this life-changing treatment in the next few months, Aasmika risks irreversible muscle damage. To buy time and minimize deterioration, her family has begun administering Risdiplam, a supportive medication that slows disease progression. However, the ultimate goal is to secure Zolgensma, giving her a chance at a healthy, fulfilling childhood.

A Parent’s Plea

“When I held her in my arms for the first time, I saw in her eyes the promise of a beautiful tomorrow. But now, after her diagnosis, all I see is the pain inflicted by a cruel disorder,” shares Suvongkar Das, Aasmika’s father.

The journey ahead is daunting for the Das family, who come from a modest background. They are appealing to kind-hearted individuals to help their precious daughter escape the clutches of this devastating disease.

Understanding Spinal Muscular Atrophy (SMA)

SMA affects approximately 1 in 8,000 to 10,000 people worldwide (Source: MedlinePlus.gov). Type 1 SMA, the most severe form, is caused by mutations in the SMN1 gene, which produces a critical protein needed for motor neuron survival. Without this protein, motor neurons die, causing muscles to weaken and waste away.

For infants like Aasmika, SMA leads to:

Inability to hold her neck steady

Inability to sit without support

Difficulty swallowing

Trouble breathing

Inability to turn or move independently

The Miracle of Zolgensma

“A single dose of this medicine can free your baby from the clutches of this rare disease,” says a doctor at Bangalore Baptist Hospital.

Zolgensma (Onasemnogene Abeparvovec) is a groundbreaking gene therapy that addresses the root cause of SMA. It delivers a functional copy of the SMN1 gene, restoring the production of the vital SMN protein and halting the progression of the disease. This one-time treatment must be administered before Aasmika turns two to be effective.

Why Your Support is Crucial

“₹16 crore is an enormous sum for a family like ours,” says Suvongkar Das.

The Das family’s fight against time and financial constraints requires collective support. Your generous contributions can save Aasmika from the irreversible damage caused by SMA and give her a shot at life.

How You Can Help

Donate: Every contribution, big or small, brings Aasmika closer to receiving the life-saving treatment.

Share: Amplify this plea by sharing Aasmika’s story on your social media platforms. Together, we can reach more compassionate individuals willing to help.

Disclaimer

SMA is a progressive disease that worsens over time. While the fundraising for Zolgensma continues, Aasmika is being treated with Risdiplam to preserve muscle function and slow the disease’s progression. The campaign goal includes additional expenses such as post-treatment care, medications, diagnostics, rehabilitation, and consultations to ensure Aasmika’s long-term recovery and well-being.

Join us in giving Aasmika the chance to experience a normal childhood.