PK Rafeeq and Mariyumma’s son, Mohammad needs lifesaving treatment to treat the extremely rare Spinal Muscular Atrophy (SMA). To their delight, they were able to raise Rs. 18 crores in just 6 days as contributions came pouring in from all of Kerala and the rest of the world.
Rafeeq’s elder daughter, Afrah, 15 is diagnosed with the genetic disorder and has been wheelchair-bound. Since She was diagnosed in her early stages, it allowed her to be in a wheelchair.
The Matool Grama Panchayat decided to help out the family by campaigning through social media. They had formed a committee and coordinated the efforts which led to the campaign being successful in just a span of 6 days. On Monday, Farisha Abid said that they had received the required amount and urged well-wishers to stop donating.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy, a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. Symptoms include difficulty in achieving developmental milestones like sitting, standing, and walking. The child has overall muscle weakness, with a poor muscle tone, and does have the tendency to flop. They have difficulty sucking or swallowing and have a bell-shaped torso. The use of Nusisersen is for the treatment of spinal muscular atrophy. Used as an injection it improves the motor functions in the person.
Although the genetic disorder is extremely rare, routine newborn screening for Spinal Muscular Atrophy is increasingly common in developed countries. We should start screening on a preemptive basis.
We look forward to Mohammad recovering from this disorder and hope for him to have a long and healthy life.
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