Anika was born as a healthy, strong baby, with strong reflexes and a grade of ten. It couldn’t have been better. At the examination, in the fifth week after the birth, the doctor tested the reflexes and the parents noticed that Anika did not react as strongly as before. After two weeks in the hospital and various diagnostic examinations – brain ultrasound, magnetic resonance imaging, metabolic and genetic analyzes, Anika received a diagnosis that her parents had never heard of before. A rare, progressive and terminal neuromuscular disease with which 1 in 10,000 babies is born – it is called spinal muscular atrophy, or SMA for short, type 1. Most of these babies do not experience their first birthday. Second birthday, almost none.
SMA is a rare disease where the body lacks a gene that makes a protein that motor neurons use as food. Since they have nothing to eat, these neurons, which transmit impulses to the muscles, die. And the muscles, since they do not receive a signal to move, rest and atrophy. It starts with large muscle groups such as the arms, legs, neck, but after a while the muscles for swallowing, coughing and breathing also atrophy.
There was no cure until recently. Anika was lucky, if it can be said for anyone with this disease, that she was born at a time when there is something that can be done. Since her second month, Anika has been receiving Spinraza, a drug that can slow the progression of the disease. Unfortunately, as time goes on, Anika’s breathing and swallowing are getting weaker and more and more machines and help are needed to keep Anika alive.
But there is hope! Zolgensma gene therapy gives hope that Anika breathes with full lungs, regains the strength to eat and speak.
The data collected so far on Zolgensma strongly indicate the effectiveness of the drug on the whole body, including the muscles for swallowing and breathing, which are getting weaker in Anika. Zolgensma is given once, and Anika would thus receive an injection to “correct” the gene that will then produce the protein she lacks for life.
Despite her weak body, Anika’s serenity and inner strength amaze everyone who meets her. He uses all his strength to bring joy into our lives, to move in the rhythm of music and laughter.
The money raised will be used to buy Zolgensma and medical expenses, as well as travel and accommodation expenses.
Anika’s family turns to all dear people of good will to help in this.
For Anika’s long and beautiful life! Let’s be humane!
Let’s help Anika!
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