One-year-old Aruuzat Tashmatova needs expensive treatment.
According to Jyldyz Tashmatova, the girl's mother, they need $ 2.3 million to buy an expensive medicine.
“On November 14 this year, we learned that my daughter was diagnosed with spinal muscular atrophy,” says mother Aruuzat. Arusha was born as a completely healthy child, and everything was fine. But at five months, the support on the legs disappeared, it began to gradually weaken. Now she is 1.8 years old, she cannot sit without support, walk, general muscle weakness, does not raise her arms above the elbow, cannot keep her head lying on her stomach, does not turn over on her own, ”said the girl's mother.
Until May last year, there was only one drug, "Spinraza", which supports the child's ability to move, but over time it is washed out of the body, it must be administered continuously. However, a year ago, the drug "Zolgensma" was invented and registered, capable of completely replacing a broken gene in DNA. Its cost is about $ 2.3 million.
SMA (spinal muscular atrophy) is a genetic neuromuscular disease that affects the motor neurons of the spinal cord and leads to progressive muscle weakness. The disease is progressive, weakness begins in the muscles of the legs and the whole body and, with the development of the disease, reaches the muscles responsible for swallowing and breathing. At the same time, the intelligence of SMA patients is absolutely preserved.
Depending on the severity of symptoms, there are 3 main types of proximal SMA: SMA 1, SMA 2, SMA 3. The earlier the first signs of the disease appear, the more pronounced the symptoms, the more severe they are and the faster the disease progresses.
Zolgensma is a real breakthrough in gene therapy and the fight against SMA. It not only stops the development of the disease, but also improves the general condition. It only takes one injection to heal. However, the drug is only suitable for those with SMA diagnosed in infancy. An important condition: it must be introduced before the child is two years old, otherwise there will be no effect. The price is cosmic - more than 150 million rubles per injection. Zolgensma has already entered the Guinness Book of Records as the most expensive medicine in the world.
To date, the sale of Zolgensma is allowed only in the USA
Requisites for helping little Aruuzat:
My Oh !: 0707724416
Bishkek City Drama Theater
Kyrgyz National Academic Opera and Ballet Theater, Bishkek