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Urgent: Parents' fight for 16 crore drug to save SMA-2 baby
“SMA - I wasn’t quite familiar with this medical condition, until our 1-year-old was diagnosed with it. Now, slowly, the disease has started to take control, affecting her muscles and her breathing. She can’t sit up without support, nor can she crawl. She can’t do a lot of the things normal babies her age do. Yet, despite all of this, she always has that smile on her face that tugs at our hearts and lights up our lives. Her little body may be fragile, but she’s a fighter.” - Aarti, mother
Akash and Aarti’s precious 1-year-old daughter is facing the toughest battle of her life, at a very tender age. Her tiny body is being ravaged by spinal muscular atrophy (SMA) Type-2, threatening her very existence. Every passing moment, these parents witness their little one's struggle against the debilitating neuromuscular disorder, as her muscles weaken day by day.
They thought her milestones were only delayed, unaware of the danger lurking in the shadows
Since her birth, Akash and Aarti’s little one had been growing at a steady pace and achieving all her milestones accordingly. But by 11 months old, her development had slowed down drastically and she started hunching over, as opposed to sitting up straight like she previously did. While that irked her parents, they assumed she was just a little late in achieving the rest of her milestones.But that changed right after the baby girl turned 1. Akash and Aarti had taken their daughter for her routine vaccination, when the paediatrician noticed the telltale signs of a condition causing muscle weakness. The parents were referred to a paediatric neurologist who advised that the baby undergo some tests.
“While we waited for her test results, the doctor told us the possibility of our daughter suffering from SMA, trying to prepare us for the worst. But we didn’t want to even think about such a dreadful condition taking hold of our baby. We prayed day in and day out for the next 4 weeks for the doctor’s inkling to be wrong and desperately hoped for favourable reports that said our daughter was perfectly healthy. But it only took a second for our entire world to fall apart.” - Akash, father
This little one is grappling with a disorder that affects 1 in 10,000 babies
“We were in a state of denial - we just couldn’t believe that our 1-year-old daughter, our only child, had been diagnosed with this rare genetic disorder that affects 1 in 10,000 babies. When we started coming to terms with it, we hoped to be told that this condition could be turned around. But we quickly learned that that wasn’t a possibility. Then, we found out about a treatment for this condition, and that reignited our hope…” - Akash
The crippling effects of this condition have already started setting in, and these parents were advised to begin precautionary treatments as a means to manage it. The child requires BiPAP support each night and 2-3 sessions of nebulisation during the day, to aid with her respiration. She also has to wear a splint to prevent deformities in her spine and legs.
They need to procure the life-saving drug for their daughter within the next few weeks
Doctors have revealed the ray of hope that could save their child - a one-time intravenous gene-replacement therapy called Zolgensma. But this lifeline comes at a staggering price, INR 16 Crores. However, even with the decent income he makes as an IT professional, Akash, who is also his family’s sole breadwinner, can never shell out this astronomical amount on his own, within the next few weeks.“We’re racing against time right now to procure the drug, because that is the only thing that can give our baby a fighting chance. We can see the external effects of this condition, but we don’t quite know what’s happening inside her little body. The sooner we get this treatment, the quicker we can focus on her physical rehabilitation… but a significant delay could cause long-lasting damage that even this drug will not be able to undo.” - Akash, father
These parents are braving the overwhelming odds, for in saving their daughter, they seek to save countless other children from the clutches of SMA. The weight of the world rests upon their shoulders as they fight with all their might to afford the treatment that could grant their baby a chance at life.
Bound by their unshakeable spirit to conquer SMA Type-2, Akash and Aarti wish to secure a future where their daughter can laugh, play, and cherish life's most beautiful moments. They appeal to you, urging you to join hands in this fight for their only child's life. Click here to donate.
Identity of the child is protected in adherence to government guidelines.
