In every 10,000 babies, one child is born with a condition known as Spinal Muscular
Atrophy (SMA). SMA is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement. It is characterized by the gradual loss of motor neurons, which leads to muscle weakness and atrophy. There are 4 primary types of SMA type- 1,2,3 and 4.most common and severe.
Type-1 SMA is usually diagnosed during an infant’s first six months. Babies with SMA type 1 face many physical challenges, including muscle weakness and trouble breathing, coughing and swallowing. They may need breathing assistance or a feeding tube. If not treated, type 1 can be fatal early on in life. 60% of all SMA cases
are type 1.
Among the few people who suffer from SMA, in current times in our country Siyona
Shrestha is the most notable. Siyona Shrestha born on 12th September 2019, with the glimmering eyes to see the world was diagnosed with SMA type-1 and has to be confined within the four walls of a hospital room. This condition has broken the hearts and dreams of her parents, who wanted to have a happy and prosperous life. A newly born soul suffering from this illness is a harsh truth, which we all have to endure. And although there is no known cure for this illness, Prognosis and gene therapy can make the life of the little one a lot more comfortable. For which there aren’t any proper resources of manpower in our country.
For the gene therapy, she requires a medical drug “Zolgensma” which costs 2.1 million USD which will be almost impossible for an average man from a third world country to ever afford, but Mr. Shrestha has started a fundraiser for Siyona’s treatment, which started as the last glimmer of hope for Siyona’s guardians. The fundraiser has now gained momentum and was able to raise $358,794 out of the $2,300,000 that is required for the drug and the treatment.
These kinds of incurable diseases are taking the lives of hundreds of thousands of innocent children and adults in the world every year. And the condition is even worse in small and underdeveloped countries like ours, where there isn’t any proper resource for its treatment or any proper foundations/organization for support. To support the children suffering from these kinds of illness Mr. Shrestha has committed to run an NGO
I will leave the E-Sewa donation link below and for anyone interested website of SMA foundation which needs funds for its research on a cure for SMA https://smafoundation.org/