Siblings who have a rare genetic disorder

Seven-year-old Lashith Venkata Naga Ayyan longs to run, run and race motorcycles and cars like his father. Likewise his five year old brother Mokshith.

This will only be a dream with no cure for a rare genetic disorder they suffer from, spinal muscular atrophy (SMA).

Without losing hope, they happily sang a few songs as they are sure that their father D. Vinay Kumar, a real estate agent, and mother Vedavathi, a housewife who takes care of them around the clock, will arrange treatment .

“When Lashith missed a couple of milestones, including running after a year, we didn’t take it seriously because he was strong and, according to my mom, I didn’t start running until I was three,” says Vinay Kumar The Hindu. Her second son ran for about two years and only developed SMA after that. “For us every day is a great struggle,” he explains together with his wife.

Both have been diagnosed by doctors as having SMA2, which affects the nerve cells that control motor neurons. “We keep a watchful eye even while they sleep,” says Ms. Vedavathi.

All is not lost for the family as the drug is expensive but available in the country.

However, it will be a daunting task for parents to bear the multi-million rupee treatment costs.

Without losing courage, after exhausting all sources of money, Mr. Vinay Kumar has now turned to the crowdfunding platform ImpactGuru. There is still a long way to go as they have only been able to raise around 8 lakh so far, with over 300 people joining in with their contributions.

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