Written By: Longjam Dineshwori | Updated : February 11, 2021 8:52 PM IST
5-month-old Teera Kamat was diagnosed with Spinal Muscular Astrophy (SMA) two weeks after her birth on August 14, 2020.
Former Chief Minister of Maharashtra Devendra Fadnavis took to twitter on Thursday to thank Prime Minister Narendra Modi for waiving off custom duty worth over 6 crore on a life-saving drug for a girl child, who is suffering from a rare genetic disease.
Teera Kamat, a 5-month-old infant, from Andheri, Mumbai was diagnosed with Spinal Muscular Astrophy (SMA) two weeks after her birth on August 14, 2020. According to her parents, Priyanka and Mihir Kamat, they realised something is wrong with their child when she started getting restless while drinking milk, and once stopped breathing.
Spinal Muscular Astrophy is a rare genetic disease that needs gene replacement therapy. A medicine, called Zolgensma, required for the treatment needs to be imported from the US and it costs about Rs 16 crore in Indian currency. The child's parents had already raised the amount through crowdfunding, but taxes applicable on its import such as custom duty and GST comes to over Rs 6 crore which is out of the reach for the parents. Therefore, the parents had in October 2020 and again in January had sought help from Prime Minister Narendra Modi.
Recently, Fadnavis, Leader of Opposition in the Maharashtra state Assembly, had also written to Prime Minister Narendra Modi and Finance Minister Nirmala Sitaraman requesting to exempt all these applicable taxes on this life-saving drug.
Finally, the PM has now waived off all the taxes (approx 6.5 crore) for importing the life-saving drug for Teera.
Expressing gratitude to PM Modi for his humanitarian act, Fadnavis tweeted on Thursday, "Sincere gratitude to Hon PM @narendramodi ji for your humanitarian and extremely sensitive approach towards exempting all the taxes (approx 6.5 crore) for importing the lifesaving drug for Mumbai's 5-month-old Teera Kamat! I wish Teera a speedy recovery & healthy life!"
Sincere gratitude to Hon PM @narendramodi ji for your humanitarian and extremely sensitive approach towards exempting all the taxes (approx 6.5 crore) for importing the life saving drug for Mumbai's 5 month old Teera Kamat!
I wish Teera a speedy recovery & healthy life! pic.twitter.com/wxT8PsnSx5 Devendra Fadnavis (@Dev_Fadnavis) February 9, 2021
"This will be a great relief for the parents and pave way for saving her life," he wrote in a letter to Prime Minister Narendra Modi.
It is a rare genetic disease caused by lack of the survival motor neuron (SMN) protein. It is characterised by weak muscles and trouble breathing. Unfortunately, many infants with the disease die before age two.
Scientists have linked loss of the SMN1 gene, which provides instructions for making the survival motor neuron protein, to this disease. Therefore, treatments of SMA usually targets the genetic mutation to stop its progression.
In severe forms of SMA, symptoms may become noticeable within the first six months of life. Symptoms are less severe in children with milder forms and may not be obvious until the child is 18 months or older.
Children with SMA may develop symptoms like:
SMA is an autosomal recessive disease, which means two copies of an abnormal gene must be present for the disease to develop. In most SMA cases, both copies of the SMN1 gene are found missing.
When both parents carry the genetic mutation, there is 25 percent chance that they will have a child with SMA from each pregnancy. You're more likely to be an SMA carrier, if someone in your family has the disease.
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