3-year-old Anika Sharma must stay under 13.5 kg to survive:Parents racing against time, collected 5 crore 60 lakh rupees for 9 crore rupees life-saving injection

Innocent Anika Sharma, 3 years and 2 months old, suffering from SMA Type-2 disease, has only one last chance for treatment. If her weight reaches 13.5 kg, her treatment will become difficult. Therefore, her parents have put her on a diet. She hasn’t been given food for three months. The parents are also busy raising money as soon as possible, so that Anika can be treated in time. Anika needs an injection worth 9 crore rupees, which will come from America. To raise money, the parents are doing crowdfunding daily with many people. Through crowdfunding and donations, 5 crore 60 lakh rupees have been collected so far. The family is working to raise the remaining money. One criterion has passed, now only the last chance remains Anika’s mother, Sarita Sharma, said that Anika’s current weight is 10.5 kg, and the injection needs to be administered before she reaches 13.5 kg. To prevent weight gain, Anika has been put on a diet. Anika is given fruits, juice, tea-biscuits, and halwa (a sweet pudding) to eat. They don’t give bread, rice, or fruits that would increase her weight. They give her things that fill her stomach. Anika hasn’t been given food for three months so that her weight remains under control and doesn’t increase. To treat her child, the mother has even stopped wearing slippers. The mother said that the prescription made by Delhi AIIMS hospital had two criteria for treatment. One was that Anika had to receive an injection before the age of 2 years. The second was that she had to receive an injection before reaching 13.5 kg in weight. The age criterion has passed, but the weight criterion is still remaining. This is the last chance to save her life. This is the food from morning till night throughout the day Mother said that after Anika wakes up in the morning, she has to be given a medicine. Before giving that medicine, they feed her papaya. After that, a powder is made, in which fox nuts are roasted, ground, and then almonds, walnuts, and unrefined sugar (khand) are mixed into it, which makes it sweet and also doesn’t increase weight. This powder is mixed with milk to make a halwa and given to her. During the day, she is given juice of selected fruits. In the evening, she is given tea and biscuits. At night, the powder is given again. Roti, sabzi, dal-chawal, or such things that would increase her weight are not given. According to the mother, she is also tired of eating the same thing every day. Many times, she remains hungry from morning till evening, refusing to eat that. We also don’t feel good that we cannot give her what she likes. Every day, she also goes with us for crowdfunding. If someone feeds her something outside, she demands the same thing. So, if we snatch that thing from her hand, she starts crying, demanding the same thing. In such a situation, we try to feed her in different ways. We are facing a lot of trouble because if her weight increases, this effort will not be useful. Difficulty in breathing too Sarita said that they take the child for crowd funding, but the child suffers from a disease that makes breathing difficult. When she is exposed to the outside atmosphere, she catches a cold, which makes breathing problematic. Therefore, she has to be shown to a doctor and is on medication. In such a situation, sometimes they don’t even take her out. That’s why they have to face a lot of trouble. We have a machine at home and keep checking her weight repeatedly. We hope from the public that we have reached 5 crore 60 lakh. The target of 3 crore 40 lakh is still remaining. If the public still supports us, our child will get the injection. Crowdfunding was done in many places besides Indore Father Praveen Sharma said that since November, we have been campaigning to raise money for the child’s treatment. With the public’s cooperation, by setting up camps at various places, we have collected 5 crore 60 lakh rupees, of which 50 lakh rupees were sanctioned by JP Nadda from Delhi AIIMS. 3 crore 40 lakh rupees are needed for the child’s treatment. if the public cooperates a little more, the child will be treated. Besides Indore, crowdfunding has been done in Ratlam, Badnawar, and Badnagar. Additionally, preparations are underway for crowdfunding in Khandwa and Ujjain. We are trying to go wherever we can. Many celebrities have also made videos appealing to the public for the child. Anika can be helped through this QR code Know how dangerous the disease is According to Dr. Hemant Jain, a pediatrician from Indore and former Dean of MGM Medical College, in the rare neuro-muscular genetic disease SMA, the child’s muscles gradually start to weaken. Signals from the brain and spinal cord to the muscles decrease. In this disease, the motor nerve cells of the spinal cord start to get damaged. The brain is unable to send messages to move the muscles. Therefore, the child starts to lose control over their body. Initially, weakness is observed in moving hands, feet, and the body. Over time, it can become difficult for the child to sit, walk, and even breathe and swallow. Due to this disease, the muscles of the body become weak. In severe cases, paralysis or even death can occur. Doctors say that the difficulty is that currently only one company, Novartis, is manufacturing the medicine. No other company has started research or production on it yet. This is why it is very expensive. According to information, there are only a handful of patients with this disease in the world. In such a situation, a lot of money is spent on research and trials to prepare the medicine. The situation is such that it is difficult to find patients for trials. It ranges from Type 1 to Type 4, which occurs in people of different ages. SMA Type-1: This is more severe, found in children from zero to two years of age. It rapidly destroys the motor neurons present in the spinal cord. It causes the death of more than 90% of children. SMA Type-2: It causes the death of over 30% of patients aged 2 to 25 years. Disease can be identified in the mother’s womb Dr. Hemant Jain stated that this disease can be identified when the child is in the mother’s womb. Many children are unable to move properly in the womb. In such cases, specialist doctors test their cells. That’s when the disease is detected. If the child receives timely treatment as soon as they are born, they can become completely healthy. The later the disease is detected, the more cells are destroyed over time, which cannot be recovered. Even the injections available for this cannot revive dead cells. New cells can be prevented from coming under its influence. Dr. Jain stated that the woman should undergo genetic counseling the next time she conceives. Tissue is extracted from the baby to perform an amniocentesis (gene) test. This can detect SMA disease in the unborn child. Finding patients for trials is also difficult Dr. Jain said that any drug is trialed before being brought to the market. In India, one out of every 10,000 people suffers from SMA. Therefore, it becomes very difficult to find patients for its trials and studies. Stating another reason, Dr. Jain said that SMA disease is treated with gene therapy, meaning a new or altered gene is inserted into cells to cure a disease, so that they can produce healthy proteins or correct defective genes, which is also why this medicine is expensive.