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In early December, Serbia was happy to hear that the money for Anika Manić’s (2) treatment was collected after three months. However, the little heroine is not ready for her biggest fight yet.
Her parents announced on the Facebook page “For the long and beautiful life of Anika” that the girl is too weak for the trip at the moment, reports Telegraf.
– Dear friends, we imagine that our first appearance in the new year will be an appearance of good news and that we have a new beginning ahead. However, as we have experienced many times, SMA is an insidious and unpredictable disease, they stated.
According to them, during the preparatory tests necessary for Anika’s therapy, it turned out that one of the parameters was not in the appropriate values.
– Meanwhile, Anika had a fever and had difficulty breathing, so we spent the last days in the hospital. Anika is currently recovering at home, but she is weak and there is always a risk of complications for the children due to her condition. Unfortunately, for all this, the trip to Budapest has been postponed until March, when we will do all the analyzes. If there’s any hope right now, it’s that the hospital will be ready, regardless of the January deadline, to treat Anika in March, if all the tests are in order.
– What can we tell you … It’s very difficult … We try to be Anika’s strength. We try to fight day after day. We pray that this will be another temptation on the way to a better future and we firmly believe in a positive outcome. We wholeheartedly hope that the struggle, love, desire, prayers, and positive thoughts you sent to our Anika have their meaning and that she receives therapy that gives her the opportunity for a long and beautiful life. As before, we will contact you with all the news. Thanks for everything, good people, your support means a lot to us! – they declared.
Let us remind you, Anika was born a healthy, strong baby with strong reflexes and a grade of ten. It couldn’t have been better. On examination, in the fifth week after birth, the doctor checked her reflexes and the parents noticed that Anika did not react as strongly as before. After spending many days in the hospital and several diagnostic tests (brain ultrasound, MRI, metabolic and genetic tests), Anika received a diagnosis that her parents had never heard of before. A rare, progressive, terminal neuromuscular disease with which 1 in 10,000 babies is born; it’s called spinal muscular atrophy, or SMA for short, type 1. Most of these babies don’t experience their first birthday. Second birthday, almost none.
SMA is a rare disease in which the body lacks a gene that makes a protein that motor neurons use for food. Since they have nothing to eat, these neurons, which transmit impulses to the muscles, die. And the muscles, since they receive no signal to move, rest and atrophy. It starts with large muscle groups like the arms, legs, neck, but after a while the muscles for swallowing, coughing and breathing also atrophy.
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