01/12/2020
Charity For SIYONA SHRESTHA.
The baby, Siyona Shrestha, is suffering from spinal muscular atrophy, a rare disease. Her parents had appealed for help over social media.
Siyona's father, a pediatrician. "We are helpless, the treatment is available only in the USA, and the cost is beyond our reach."
When the nation went into a lockdown for the first time following the threats of COVID-19 outbreak in March, the couple was battling to digest the newly announced shocking health status of their only child. Though both are medical practitioners, the disease was never heard of. But it was already making their cheerful, adorable daughter weaker by the day. Aleena is a nurse.
"We consulted many doctors and surfed the Internet to gather knowledge about the disease. There is not much awareness about SMA, which affects one in 6000 to 10,000 people,"
August is marked as SMA awareness month. SMA is a progressive genetic disorder with different types and severity. It affects the nervous system and muscles, making it hard for the patients to breathe, swallow or function normally. It's not a friendly term even among doctors, according to Sandeep. "Given our health facilities or access to doctors, especially in rural areas, I feel that our children silently die under its effect even before SMA is diagnosed," he notes.
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