News Analysis India

Tag: Spinal Muscular Atrophy

  • Coal firm gives Rs 16 crore to employee for daughter’s SMA treatment injection

    By PTI

    KORBA: South Eastern Coalfields Limited has handed over a cheque of Rs 16 crore to an employee whose 2-year-old daughter is suffering from a rare ailment called Spinal Muscular Atrophy and requires an imported injection called Zolgensma of that amount, an official said on Saturday.

    The cheque was handed over on Friday Satish Kumar Ravi, who works as an overman, said SECL Dipka project mining general manager Shashank Shekhar Dewangan.

    Ravi’s daughter, Shristi Rani, is suffering from SMA, a genetic disorder in which a person can’t control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem, and Zolgensma injection, which costs Rs 16 crore and has to be imported from the United States of America, is required as part of the treatment, Dewangan said.

    The child was diagnosed with SMA in December last year, and she is on portable ventilator support at her home in Dipka currently after undergoing treatment stints at AIIMS Delhi and SECL-empanelled Apollo Hospital in Bilaspur.

    Coal India Limited (CIL), of which SECL is a part, has set an exemplary example by showing that employees and their families are the real wealth of an establishment and saving their lives at any cost is the first and foremost job, he added.

  • Toddler suffering from genetic disorder gets Rs 16 crore injection free from US firm

    By PTI
    NAGPUR: The upcoming second birthday of Shivraj Daware, who hails from Nashik in Maharashtra, will be very special for his parents who claimed that the toddler, suffering from a rare genetic disorder, had become the first such patient from India who was given a Rs 16 crore life-saving injection by a US firm for free after winning a lucky draw.

    Shivraj is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder.

    The injection (Zolgensma – a gene replacement therapy) manufactured by a US-based firm is the most effective drug for such patients, according to doctors.

    For Shivraj’s father Vishal Daware and mother Kiran, who comes from a middle-class background, the news of the rare disorder and the huge cost of injection came as a double whammy, but they didn’t lose hope.

    After the initial diagnosis, Shivraj was referred for treatment to Hinduja Hospital in Mumbai where neurologist Dr Brajesh Udani suggested that Zolgensma injection was the drug of choice to save Shivraj’s life, Vishal Daware recalled while speaking to PTI.

    Arranging the huge amount was impossible for Devraj’s father who runs a photocopy shop in Nashik.

    However, Dr Udani suggested the family apply for a lottery to be brought out by the US-based firm for conducting clinical trials through which the family can get the injection for free if lucky, Vishal said.

    On December 25, 2020, Shivraj was selected by the company in the lucky draw to get the injection.

    On January 19, 2021, Shivraj was administered the injection at the Hinduja Hospital.

    “SMA 1 is a genetic disorder. One out of 10,000 children gets affected by the disorder. It slows down the movement of the child and the muscles stop working. Later, it leads to the death of the child,” said Dr Ramant Patil who had treated Shivraj earlier.

    Unlike Devraj, one-year-old Vedika Shinde, a resident of Pune who was also suffering from SMA Type 1, wasn’t lucky.

    She died on Sunday evening nearly two months after taking the same injection.

  • Maharashtra: One-yr-old girl who received injection worth Rs 16 crore for rare genetic condition dies

    By PTI
    PUNE: A one-year-old girl’s fight against a rare genetic disorder, which had evoked an outpouring of sympathy as well as donations so that doctors could administer her an injection worth Rs 16 crore in a Pune hospital, ended abruptly, her father said on Monday.

    Shockingly hours before the death of Vedika Shinde, her family members had uploaded photographs and videos on social media informing about her progress.

    Vedika, suffering from Spinal Muscular Atrophy (SMA) Type I, died around 6 pm on Sunday at a private hospital in Bhosari in the Pimpri Chinchwad area after experiencing breathing trouble while she was at home.

    Her rare ailment and the quest for treatment had created a huge impact on social media with netizens and others donating an amount of Rs 14 crore, following which she was administered the vital injection in Deenanath Mangeshkar Hospital here in June.

    According to Vedika’s kin, her condition was improving of late and some hours before her death, they had even uploaded a couple of photographs and videos on social media to inform about her progress.

    A doctor who had earlier treated her at Deenanath Mangeshkar Hospital said Vedika died due to “feed aspiration”, a medical term for an irregularity arising in the feeding process.