2024-04-26 06:01:15
Now, only three-year-old Darina runs around the house and happily chatters, while her sister Arina lies alone in bed or stands in a special parking place and watches her (or, if she is in a worse mood, completely ignores her).
“Until the age of one and a half, Arina was not only agile, but also more talkative than Darina, she said “mama”, “aunt”, “aunt”, “thank you”, “love” and many other words – but now she has nothing at all no more,” mother stated sadly.
The girl’s troubles began with a simple herpes virus: encephalitis (inflammation of the brain) caused by it developed, after which the girl had a stroke. For a while, it was doubtful whether the baby would survive.
“The virus invaded her brain and damaged it in such a way that the child turned from a healthy happy dancing and singing girl into a lying ball of nerves with constant epileptic seizures, cerebral palsy and spasticity,” the mother taught.
Arina, who turned three in January, now resembles a helpless baby: she just lies down, not even turning from one side to the other.
But the mother consoles herself with the thought that she is moving forward, albeit in very small steps, and not backward: in the past, the patient would just lie with her eyes fixed on one point and not react to anything. The doctors had suspicions that she could not see anything, but in Poland, specialists found that she had not lost her sight, and indeed, little by little, she began to observe what was happening around her and respond with a smile to what interested her.
In addition, for some time the girl was fed through a gastrostomy implanted in her stomach, because she did not swallow food at all. And now her parents only give her medicine through a gastrostomy, she eats the rest of her food herself – it’s true, it has to be mashed, and it’s fed by her mother sitting on her lap.
Once, the girl clearly pronounced “Gam gam” with a smile, which her mother hopes was her name for the delicious-smelling hot sandwiches. She does not make any more clear sounds, although she speaks something in her own language.
“There are better days when she is more alive, more cheerful, interested in her surroundings and keeps smiling and laughing when we tickle her.” Or he grabs my finger and looks at it intently – he couldn’t do that before. But there are also more gloomy days – I don’t know if it depends on the weather or something else – when she just lies there like before and hardly reacts to anything,” said the mother.
Her sister’s words brought tears to her eyes
Do the twins, who should now be happily playing together if Arina hadn’t succumbed to the disease, have some kind of connection? “Really so. Arina keeps watching Darin and laughs when she blurts out something. And Darina only recently began to understand that her sister was sick – she had already forgotten how they used to run together until half past one, and she was used to her only lying down. Once she lay down next to her feet and called: “Sister, let’s go play!” – when we heard this, we wiped our tears, where is this sister going to play…” – stated the mother.
However, even though the reality is bleak, the parents do not lose hope and try to take care of their daughter as much as they can and help her improve: they attend state-sponsored rehabilitation in Lithuania, and also take their daughter to Poland, where the procedures are paid, but much more intensive and the effect is greater.
“Over the past year, we have been to Poland 7 times – we visited the Olinek and Paley clinics, we were able to see the best children’s neurologist Marta Bogotko (unfortunately, you have to wait months for a neurologist’s consultation in Lithuania). March 1 after returning from Poland, May 11 we will travel there again. Then we are preparing to go to the Adeli rehabilitation center in Slovakia, where the prices are even higher (a month’s classes with accommodation would cost about 5500 EUR without travel expenses), although we have not yet saved the necessary funds for that,” Irina taught.
The family has already spent so much money on rehabilitation and other needs of Arina that they had to sell the house. To be fair, they are still living in a house for which they will be paying the loan for a long time. This house was owned by Irina from a long time ago, and her second husband previously had his own small (about 85 sq.m.) house in the countryside, for which the loan had already been paid off – he decided to sell it.
When asked if it was difficult to give him up, the interviewer said: “It was not an easy decision to make, especially for a man who had put a lot of effort into the furnishing of that house – but when you think about it – it’s just a thing, human life and health are much more valuable. If only it would help Arina, we’d sell a lot…”
Takes care of children and works
One can admire a woman’s efforts not only to do as much as possible for her disabled daughter – such a desire is perfectly understandable for many mothers – but also her desire to work to make the family better, because the state benefits received for children are by no means sufficient.
Before the girl’s illness, Irina, who has three higher educations (accountant, accountant and marketer), worked in two jobs. Then he lost them, but now he doesn’t sit still without activities. She got a job in a cafe near her home, so that if her daughter, who was being cared for by relatives, became ill, she could go to the hospital within 5 minutes. run home
Now she has obtained a certificate of individual activity and advises students writing papers (she used to work as a teacher), in addition, she has become a food delivery person – she has already tried to do this several times, everything worked out, so when the flow of students subsides, she will get more serious about courier work , who left the children to a man with whom they coordinate their work schedules, or to a mother-in-law.
Both twins spend their days at home. “We could already send Darina to kindergarten, but until she gets stronger, Arina needs to be protected from viruses as much as possible – that’s why we left her sister at home for the time being, so that they don’t get carried away from the group of children,” said the mother.
The mother’s care is also needed for the teenage son – he plays volleyball seriously, belongs to the junior national team, is now finishing the eighth grade and will enter a sports school.
I ask my mother if she is not overtired from all the worries. “Well, everything happens, but my husband and I coordinate our work very much and support each other and try to make Arina better as possible. In Poland, specialists say that she basically has opportunities to learn to walk and talk,” she said.
And what do Lithuanian doctors predict for Arina? “They don’t say anything except that it’s all about her brain, and its further development is difficult to predict (not the same as telling when a broken arm or leg will heal). The fact that Arina’s brain is severely damaged, its cortex is almost destroyed – but it can improve somewhat, it is necessary to train it.
I met a mother whose daughter was born without one hemisphere of the brain, the medical prognosis was very grim, but at the age of four, that girl is walking and talking. According to her mother, Neuroptimal brain stimulation therapy has helped her a lot – and we will definitely try it. I understand that miracles don’t happen, but we can’t afford to lose hope – if we lose it, then nothing good will happen,” said the mother of twins Irina and Darina.
Those who want to contribute to the girl’s rehabilitation until May 2. can still transfer 1.2 percent. income tax to Arina Marija Černiauskaitė’s charity and support fund.
Details of the fund can be found here:
2024-04-26 06:01:15