Prime Minister Narendra Modi's humanitarian approach is being applauded by everyone after he waived off Rs 6 crore as a GST amount against Rs 16 crore of imported medicines required to treat a six-month-old baby girl Teera Kamat in Mumbai. Teera is suffering from Spinal Muscular Atrophy, a very rare medical condition that often doesn't let children live beyond 5-months. Every day is a struggle for Teera and her family. Teera's parents are trying every possible way to keep her alive but they know that apart from medical help, they need both money and miracle.
Baby Teera's parents Priyanka and Mihir Kamat have raised Rs 16 crore through crowdfunding for their daughter who needs surgery to be cured. It also includes the cost of the medicine Zolgensma which has to be imported from the US.
According to reports, Teera's parents wrote to PM Modi about their daughter's medical condition. Former Maharashtra Chief Minister Devendra Fadnavis wrote to the PM and Finance Minister Nirmala Sitharaman reiterating the request to exempt taxes. The tax exemption for baby's treatment amounts to at least Rs 6.5 crore and it includes 23 percent import duty and 12 percent Goods Services Tax. PM Modi responded saying that the customs duty on the imported life-saving drug will be exempted for Teera. PM Modi's gesture has brought a huge relief to the Mumbai born infant's family.
Teera's medical condition:
What is SMA or Spinal Muscular Atrophy?
Spinal muscular atrophy or SMA is a genetic disorder characterized by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). SMA is caused by a loss of nerve cells, called motor neurons that control muscle movement. The weakness tends to be more severe in the muscles that are close to the center of the body (proximal) compared to muscles away from the body's center (distal). The muscle weakness usually worsens with age.
Spinal muscular atrophy (SMA) generally happens to babies or small children and makes it hard for them to use their muscles. If your child has Spinal Muscular Trophy, there's a breakdown of the nerve cells in the brain and spinal cord. The brain stops sending messages that control muscle movement.
When that happens, your child's muscles get weak and shrink, and children can have trouble controlling head movement, sitting without help, and even walking. In some cases, they can have trouble swallowing and breathing as the disease gets worse.
Types of SMA
Type 0. This is the rarest and most severe form of SMA and develops while you’re still pregnant. Babies with this type of SMA move less in the womb and are born with joint problems, weak muscle tone, and weak muscles for breathing. They often do not survive due to breathing problems.
Type 1. This is also a severe type of SMA. A child may not be able to support their head or sit without help. They may have floppy arms and legs and problems swallowing.
The biggest concern is a weakness in the muscles that control breathing. Most children with type 1 SMA don't live past age 2 because of breathing problems.
Keep in touch with your medical team, family members, clergy, and others who can help give you the emotional support you need while your child fights this disease.
Type 2. This affects children 6-18 months old. The symptoms range from moderate to severe and usually involve the legs more than the arms. Your child may be able to sit and walk or stand with help.