160 million injection will cure her disease

“Your daughter will not live for more than six months. Treatment is not possible in India,” said the doctor who treated Tira Kamat the day before.

She has been undergoing treatment at SRCC Hospital in Mumbai for the past few days. Mihir said, “Her voice was very loud when she was born. When she cried, her voice was heard in the waiting room. Her mind was sharp and she was taller than a normal child. I named her Tira because she is as tall as Tir. ‘

After the birth, she was brought home, everything was fine. But after a while, her condition began to change. While drinking mother’s milk, Tira started having difficulty. There was a lack of water in the body. Once she held her breath for a few seconds.

Her parents felt threatened when she found it difficult to breathe while vaccinating.

The doctor asked to see a neurologist. The neurologist discovered that Tira was suffering from SMA type-one, which is a very dangerous disease.

Protein genes

In fact, the human body contains a gene that makes proteins that keep muscles and nerves alive. But Tira’s body did not have this gene. As a result, her body could not make protein and her body became intoxicated. The brain muscle was also becoming less active and lifeless.

From breathing to eating, the muscles of the brain operate. But it was not happening in the body of the Tira. This condition is called SMA or spinal muscular atrophy. There are many types of this and type one is the most serious.

On January 13, Tira was admitted to the SRCC Hospital in Mumbai with respiratory problems. One of Tira’s lungs stopped working, then she was kept on a ventilator.

Mihir said, ‘She is on the ventilator now, she is fine. However, she cannot be kept on a ventilator for a long time. Because if she is kept on the ventilator for a long time, there is a risk of infection in the tube, so now she is fed directly. ‘

There is no cure for it in India

It is challenging for Priyanka and Mihir to get medical treatment along with Tira’s care. The first problem is that the gene is released into the body to treat the disease, which is not possible in India.

Mihir says – ‘Tiraka’s health condition is also critical, it is not possible to take it out anywhere. In such cases, she has to be treated in India. ‘

According to the BBC, efforts are being made to bring a special type of injection from the United States for her treatment. The cost of the injection is Rs 16 crore.

A ray of hope

Mihir works in an IT services company and Priyanka (Tiraki’s mother) is a freelance illustrator. Both were shocked to hear the price of these injections. But some time later I saw news on an international news channel where people were using crowdfunding to treat such difficult diseases.

Mihir and Priyanka got some hope from the news.

Mihir said, “It used to be very difficult. Doctors said the girl could not live more than six months because treatment was not possible in India. I have never seen 16 crore rupees in my life. But we thought about getting started, and we believed it could be done like Canada. ‘

Both Mihir and Priyanka shared about it on social media. After that, Tira Fights created an Instagram and Facebook page by writing SMA. Through this, they regularly provided information about Tira’s health condition. She used to appeal for help.

They also launched a campaign to raise money for Tiraka’s treatment.

Mihir said, ‘People listen to our story, they feel this story as their own. Everyone is helping. ‘

Other people are also appealing for Tiraka’s help. Tira, who is suffering from severe anger, keeps smiling looking at her with her big eyes. About Rs 160 million has been deposited so far. But the cost of the injection is Rs 160 crore, besides other expenses. The doctor has already started the procedure for the injection. However, this will take some time. Apart from the cost of injections, there are many other choices for the family.

Mumbai Hospital Neurologist Dr.Nirmal says, “SMA is one of the four types of spinal muscular atrophy,”. The first is the most serious. It is found in children up to six months. Nerves become lifeless. The child does not receive any information. The brain muscles weaken and eventually stop working. In this case, the child has to survive. To this day, there is no cure. ‘

He adds, “However, in 2019, Jolgensma therapy was approved in the United States for the treatment of this disease.” This treatment is given to children under two years of age. But even if they are not completely discharged, the children are still discharged to some extent. These injections cause the nerves in the body to become lifeless. Weak muscles begin to receive signals from the brain, and they gradually become stronger. The child grows up. This treatment is very expensive but effective. ‘

Tira is five months old, her nervous system is not completely damaged, but her muscles are extremely weak, but she can move. Mihir said, ‘This injection should be given only once. If the injection is given on time, the Tira’s muscles will become stronger. The body begins to make protein and its life becomes normal. ‘