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Rimmusia was born an ordinary girl - she sat up on time, crawled, started taking her first steps and saying words. Until one day her parents noticed something unusual. It seemed that their daughter's development began to slow down, she got tired quickly, and strange movements and symptoms appeared. After extensive research, the doctors told them that Rimma had an extremely rare, complex disease called INAD. There are only about 150 children in the world with this diagnosis, and most do not live more than a few years.
Treatment for INAD was invented only recently. It is complex and expensive - more than 2,000,000 euros. So Rimma's parents wasted no time in raising funds, and millions of Ukrainians and even philanthropists from abroad joined in. We all fought together for the life of the little girl - for the chance to be the first to beat the disease that until recently was considered fatal and incurable.
Today, when the collection is closed, we will tell you about the preparation for treatment and answer questions about INAD.
Due to certain circumstances, it will not be possible to start treatment immediately. First, Rimma's family is still preparing documents for the visa, waiting for an official invitation from the clinic where Rimma will receive gene therapy and spend some time. As soon as the visa is granted, the family will decide on transportation - it is very important to take care of Rimma's safety and comfort during the long flight.
Secondly, to start treatment, it is necessary to carefully check the child's condition and prepare for possible complications or reactions to the drugs. Before starting gene therapy, Rimma will be prescribed steroids to suppress the immune response. During this time, Rimma will have to stay in complete isolation to protect her body from potential risks - various infections. In general, the preparations will take several months, so the gene therapy should begin no earlier than winter.
Rimmusya will receive gene therapy at a clinic in New Jersey. The procedure itself will take place under sedation and will last about 30 minutes. All this time, doctors will monitor the girl's condition, taking care of maximum safety and the absence of negative reactions. After the procedure is completed, Rimma will take concomitant medications for a long time, while doctors will monitor changes in the child's body.
The treatment is guaranteed to stop the development of the disease and "fix" the functioning of the genes. This will at least save Rimma from the worst consequences. Rimma will live without new complications, without further loss of mobility and important functions: swallowing, breathing, blinking.
For gene therapy to work as effectively as possible, Rimma has a long way to go, including body support, rehabilitation, and concomitant treatment. For at least 5 years after the gene therapy, Rimma should undergo regular examinations and medical monitoring.
Rimma's story is proof that miracles do exist and even the worst of adversity can yield when we unite and give each other support. We are sure that your kindness will be decisive not only for Rimma, but also for other seriously ill children and their families who do not always dare to open million-dollar fundraisers and despair of fighting for a healthy future.
Moreover, Rimma's successful treatment could be a clear proof of a medical breakthrough. Perhaps it is Rimma's case that will be described in advanced medical textbooks, and her recovery will give rise to new discoveries in medicine.
We thank everyone who joined the collection and did not pass by Rimmusi's story - you are incredible!
