There are so many diseases in the world that people do not even know about many about many. One such disease was detected by the parents of an American child. When the child was 8 months old, it was completely healthy, but suddenly he came to know that he has a rare disease. Now the situation has come that he can die by the age of 10 years.

The 2 -year -old Jack Draury of New Jersey (America) proved to be a miracle for doctors at the time of birth. Despite being born in 33 weeks, he breathed himself and came home in just 17 days, but after a few months when he could not cross the normal stairs of development, the family started worrying. At first he did not turn, neither will he do it and it became impossible to stand slowly on the feet. After long investigations, doctors said that Jack has a rare and fatal genetic disease called Infantural Neuroaxonal Dystrophy (Inad). In this disease, a layer like fat on the nerves starts freezing, which gradually ends the body’s control, the ability to speak and understand. So far, this disease has been found in only 250 children in the world and most children are unable to survive till the age of 10.

Large amount is to be raised for treatment

Jack’s parents, Kelsey and Tim, were broken by this news. He started every possible effort to help the son. Meanwhile, he came to know about the inadcure foundation in New Jersey, which is working on gene therapy for this disease. This therapy proved to be very effective in early tests on mice. The objective is to slow down the motion of the disease by transporting healthy genes to children’s cells instead of affected genes (PLA2G6). Although this is not a permanent cure, it can give more time and better life to children. The biggest challenge was to raise $ 4.5 million (about 4 crore rupees), so that the pharmaceutical company could start preparing for the trial. Jack’s family started a campaign called “Jacques Miracle Mission”. Initially, he felt that there would be a little donation, but in just 6 days the entire fund was gathered.

Family saw a ray of hope
Everyone from common people to celebrity extended help. Now FDA’s approval for the trial is awaited. Trial is expected to be held early next year, in which only 10 children will get space. Jack is likely to be selected due to the age and condition of Jack, but it is still not decided. Jack has lost many basic capabilities at the moment- now he is not able to drag himself and has difficulty in catching the bottle. His parents are expected to start therapy as soon as possible, so that the speed of the disease can slow down a bit. Tim and Kelsey say that they are now focusing on making every day special for the son- whether it is a song “Baby shark”, dance party or a lot of laughter. This story of Jack also brings out that beautiful picture of humanity, where unknown people also unite to save the life of a child. Jack may be fighting a rare and deadly disease, but the expectations of his parents and society have raised a new light in his life.