Andhra Pradesh

Siblings suffering from rare genetic disorder

Lashith Venkata Naga Ayyan and his brother are suffering from spinal muscular atrophy.  

Seven-year-old Lashith Venkata Naga Ayyan yearns to walk, run and race motorbikes and cars like his father. So does his five-year-old brother Mokshith.

This will remain just a dream without a cure for a rare genetic disorder, spinal muscular atrophy (SMA), which they have been suffering from.

Without losing hope, they cheerfully sang a couple of songs as they are sure that their father D. Vinay Kumar, a realtor, and mother Vedavathi, a homemaker, who take care of them 24x7 in turns, will some how arrange for treatment.

“When Lashith missed a couple of milestones, including walking on completion of one year, we did not take it seriously as he was hefty, and according to my mother I had started walking only after turning three,” Mr. Vinay Kumar tells The Hindu. Their second son was walking till two years or so and developed SMA only thereafter. “Every day is a big struggle for us,” he explains along with his wife.

Both have been diagnosed by doctors as suffering from SMA2 that affects the nerve cells that control motor neurons. “Even while they are asleep, we keep a close watch,” says Ms. Vedavathi.

All is not lost for the family now that the medicine, though costly, is available within the country.

Yet, it will be a daunting task for the parents to meet the treatment cost running into crores of rupees.

Without losing heart, Mr. Vinay Kumar, after exhausting all sources of funds, has now turned to crowdfunding platform ImpactGuru. It is still a long way to go as they have been able to raise only about ₹8 lakh now with over 300 people chipping in with their contributions.


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Printable version | Aug 1, 2021 8:01:30 AM | https://www.thehindu.com/news/national/andhra-pradesh/siblings-suffering-from-rare-genetic-disorder/article34844282.ece

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