Public assistance has been sought for donations for the treatment of Shamel, a 15-month-old Sri Lankan boy, who has been diagnosed with a genetic condition called Spinal Muscular Atrophy (SMA).
Shamel’s family said in a statement, that the baby boy, who is currently living in Singapore, was diagnosed with SMA in November through a genetic test that was done by a company in the US.
SMA is a rare neuromuscular condition that causes muscles to become weak and damages the nerve cells in the brain and spinal cord. It leads to progressive muscular weakness and affects the ability to independently sit, crawl, stand, walk, swallow and even breathe.
Shamel is currently in a position where he can only sit with support, and that too, not for long minutes. Without medication, further deterioration and eventual death of his motor neurones will lead him to total immobility and in a worst-case scenario, loss of life.
Shamel’s hope for survival lies in Zolgensma, a drug that is used for one-time gene therapy acting on the gene by replacing the function of the missing or non-working Survival Motor Neurone (SMN1) gene.
The family further revealed that Shamel requires to receive Zolgensma within 6 months before he turns 2, and the cost of the drug has been estimated as USD 2.125 million/SGD 3 million/LKR 815 million (depending on the current exchange rate).
“Ray of Hope”, a crowdfunding charity based in Singapore has been set up for all donations and will be handling all the payments directly to the hospital, (National University Hospital) for Shamel’s treatment.
Those who wish to assist Shamel and his family have been requested to make donations to the “Ray of Hope” crowdfunding platform by visiting the following link; https://rayofhope.sg/campaign/baby-shamel/ (NewsWire)