Parents of another Kerala child battling SMA require huge amount for treatment

Kottayam: Another child afflicted with Spinal Muscular Atrophy (SMA) in Kerala requires help for the costly treatment that entails.

Rs 75 lakh is needed for annually for the treatment of eight-year-old Guruchith, the son of P Ajikesh and Dhanya who are natives of Thiruvathukkal in Kottayam.

The family is pinning its hopes on government assistance as a huge amount has to be spent for the entire lifetime.

The child has been undergoing treatment and physiotherapy at various hospitals. The medicine, Risdiplam, for treating the rare genetic disorder  is now available in India. But the family is in a quandary as to how to raise the huge amount required.

Ajikesh is a businessman, and his wife Dhanya used to help him in his business. But now she is at home as she has to devote much time for Guruchith’s care.

SMA symptoms were first noticed in Guruchith when he was just nine months' old. Today, he wants to run around and play; go up to the second floor of the house. Sitting on a wheelchair Guruchith shared his dreams.

Guruchith is a Class 1 student at the Government Upper Primary School at Kiliroor in Kottayam district.

Recently, the plight of a few children stricken with SMA were reported and money was raised through crowd funding for procuring the costly drug from abroad. Last month a six-month-old belonging to a Perinthalmanna family died even though Rs 16.5 crore was mobilised through crowd funding.

Expert committee for SMA treatment
Kerala Health Minister Veena George has said that an expert committee has been constituted for the treatment of children afflicted with Spinal Muscular Atrophy. Chief whip N Jayaraj raised the issue in the Assembly during the debate on the demand for grants. In her reply, the Minister said that the funds are being raised for the treatment.

Currently, 122 SMA patients are in the State.

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