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As a result of this experience, her mother Dovile Čepulinskaitė, who spent two years with her daughter in various Lithuanian and foreign rehabilitation centers, and Agne Juodyte, a physiotherapist at the Santara Clinics and Reamed Clinics, who accompanied Lucrecia all this time, had an ambitious project to establish a rehabilitation institution equivalent to foreign centers.
There are already premises, specialists, part of the equipment. Unfortunately, Adeli’s neuro-orthopedic rehabilitation suits, the most effective therapy for families with disabled children, spend all their money (including living) to get it abroad, and the center cannot afford it.
The first symptoms did not seem threatening.
For Lucrecia, who turns 10 this year, the first symptoms of a crippling illness were quite strange, as if it shouldn’t have been a cause for concern: a toy suddenly falls from her hands and one leg is trapped behind it. Sidewalk. When they began to reappear, the parents went to the doctor, but the latter initially calmed down – the girl was completely healthy. He even checked his vision, considering that it might have deteriorated, but there were no changes in this area either.
“We didn’t calm down and went to see a neurologist in private. The first diagnosis we heard in his office was very terrible: a brain tumor. We were immediately admitted to the Santara clinic, we had an MRI and, fortunately, the diagnosis was not confirmed. Then a long search began, and who are the daughters. Already while she was in the hospital, Lucrecia’s condition deteriorated greatly, involuntary movements occurred, etc. Only about 80 percent remains. former son.
However, with the infusion of hormonal drugs that stimulate the activity of the brain, his condition improved a lot, everything recovered to 90 percent. This is how we live for a while: as long as the drugs work, that’s fine, after three weeks the drugs stop working and all the symptoms return ”, recalled Dovilė.
To diagnose, doctors advised to carry out specific tests abroad. At that time, they cost around 700 litas, it was a lot of money for the family. The response to the study was another shock: autoimmune encephalitis due to antibodies to the NMDA receptor. A disease that damages the brain and impairs development. So far it is not clear what causes Lucrecia to develop this disease. Maybe from chickenpox, maybe from a cold, maybe from a predisposition to allergies, Mom thought.
Photo from personal album / Lucerne
After the trip to Jerusalem, the disease stopped.
Then the fight began. Initially, these hormones helped. Half a year later, chemotherapy was instilled to suppress immunity, but it didn’t help. During that time, the daughter stopped talking. Overseas, these patients are generally treated with some form of chemotherapy, but our health insurance funds initially refused to reimburse those drugs because they did not yet have such recommendations. Lucrezia was the third girl with such antibodies in Lithuania and the first with such a difficult course.
Sickness funds reimburse only 30 minutes. duration of physiotherapy. In foreign rehabilitation centers, it lasts at least 2 hours.
We bought a vial for the first dose and the Santara clinics bought us another. It was a miracle: we carried the girl into the room in her hands and she came out of it with her feet. The life from chemistry to chemistry began anew. It lasted for 5 to 6 months, at which point it had to be re-infused. We lived like this for about four years. 2017 in February, before the next scheduled chemotherapy, I went to Jerusalem. I prayed a lot. When I returned, Lucrecia’s illness unexpectedly stopped and her health began to improve. The doctors themselves called it a miracle.
Then a new stage began: rehabilitation. If it weren’t for the TV3 Išsipildymo akcija, I wouldn’t have stood it up, because we were constantly driving: we are in rehab abroad for 2 weeks, we will rest for 3 weeks and again in rehab abroad for 2 weeks.
When I took the boy to the Santara clinics, everyone was amazed at how well the intensive care unit was helping. Previously, Lucrecia walked only 50 meters, now, 4 kilometers. Little by little he begins to speak again. Unfortunately, the quarantine stopped travel, we can’t take chances. “My daughter’s immunity after chemotherapy has not yet been restored, we have to eliminate immunoglobulins every week,” the woman shared.
Throughout this period, Lucrecia and her mother were accompanied and helped to develop a rehabilitation plan by the physiotherapist Agnė Juodytė. Women often talked about the fact that even though Lithuania has wonderful specialists, unfortunately, they don’t have enough tools and sickness funds only make up for 30 minutes. duration of physiotherapy. In foreign rehabilitation centers, it lasts at least 2 hours. Therefore, they both dreamed that a similar center would also appear in Lithuania.
How the idea of the center was born
“The idea was born in the summer, when Lucrecia’s mother and I found out about a project financed with EU funds. We have submitted an application to establish a large center for children with mental and behavioral disorders. We had even planned a plot in Karklė. Unfortunately, our request was denied.
So we decided to start with a smaller center, which will open its doors in Vilnius, Žvėrynas district. At the moment, the premises are already equipped, all the permits have been obtained ”, said A. Juodytė.
The idea of the women is to bring all the innovations from abroad that Lithuania cannot offer. First of all, it’s Adeli’s costumes. The child dons an inflatable full-body compression suit (similar to those used by astronauts in space to prevent muscles from atrophying) that helps the child stand up and pretend to walk. In this way, the muscles transmit a signal to the brain and eventually the child learns to stand up and move on his own.
“A rehabilitation company in Šiauliai has these suits, but the shift is within a month and they do not provide comprehensive assistance. We focus on having a speech therapist, an occupational therapist and a physiotherapist work together, so that the duration of the procedures is not 30 minutes, as in state institutions, but about 2 hours, as in foreign rehabilitation centers. For example, a physical therapist works with an occupational therapist for one hour and a physical or occupational therapist works together for another hour, depending on the child’s needs. We have already assembled a team ”, said the interlocutor.
Personal album / Lucration photo album
Little miracles happen all the time
According to the physiotherapist, more and more new drugs are now being discovered to treat rare diseases, but these children need intensive long-term rehabilitation to regain nerve impulses.
“It seems natural and healthy to us that a child can have a cup and drink it himself. But for a sick child and his parents, it is a great achievement if the child becomes at least a little more independent or can say at least one word to themselves. express their emotion. And what happens when parents see for the first time a child in an Adeli suit standing up, stretched out? Due to these miracles, families already go to foreign centers because they see changes. However, for progress continue, this work must continue.
Photo from personal album / Lucerne
Science already suggests that the brain tends to recover. Sure, each case is individual, but working with a child can produce amazing results.
I have seen many miracles. For example, neurologists go to resuscitation and say that a stroke has occurred and there will be nothing from that child, the so-called vegetable will remain. And the child comes out with only two feet after years of various rehabilitations. There is little residual tension in the arm muscles and everything else has recovered, both thought and speech, ”said the interlocutor.
In the future, the doctor also dreams of more equipment, such as state-of-the-art brain stimulation equipment, but it all depends on finances. The current target is Adeli’s suits.
Personal album / Lucration photo album
“Of course, it is possible to get a loan and buy them, but then the price of the service would increase significantly and parents who raise disabled children are already having a hard time, because usually only one member can work in those families. That is why we dream of collecting 25 thousand euros to buy these costumes to help 25 children of “Ray of Hope”, the largest group of families that raise children with disabilities. We already have a list of them. If we can raise this money, the price of the service would be 50 percent for them. smaller and bite them. So we would really work for the children for the sacrifices “, – assured A.Juodytė.
Those who are willing and able to donate to this much-needed rehabilitation measure for children with disabilities can do so here:
Container: Donation from the Destination Public Institution
What.: LT84 7300 0101 6440 4620
Purpose: ADELI
OR
Container: Lucrecia Solidarity and Solidarity Foundation
What.: LT19 7300 0101 5820 4483
Purpose: ADELI
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