Please help my son get his life back
Leczenie w Polsce, konsultacje, rehabilitacja, dojazdy, pobyt
Ends on: 08 October 2022
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Leczenie, konsultacje, diagnostyka, rehabilitacja, dojazdy i pobyt
Leczenie, konsultacje, diagnostyka, rehabilitacja, dojazdy i pobyt
Fundraiser description
I bring up my disabled son, my only son. without anyone's help, I am with a sick, suffering and unpredictable child 24 hours a day. Without a family, without anyone and more and more often without hope ... Initially, nothing indicated that our lives would become a nightmare. Until recently, Łukasz functioned well, despite numerous problems related to autism. I had great hope that thanks to constant therapies, my son would catch up with his peers and someday he would be independent ...
In February 2017 Łukaszek went through a seemingly simple throat infection. He was 8 years old. Suddenly he began to lose acquired skills, became aggressive, echolalia appeared, obsessive-compulsive disorder, oppositional-rebellious behavior, aggression. Since then, Łukaszek has been focusing on his veins for 80% of the day, talking only about them, squeezing the limbs so that the veins come out. He does it to himself, me and everyone he meets. He beats himself around the heart, washes his hands over and over, touches with his mouth all posts, pipes, road signs, drains. He knocks, knocks, destroys objects, doors and furniture. He demolishes an apartment, attacks children and adults. He often hurts me physically. There were fears, hallucinations, suspicions of poisoned food. He falls into attacks of fury and fear alternately, he runs blindly, runs out uncontrollably into the streets, throws objects in shops, pushes passers-by.
He is not suitable for school. We did not manage to go on a rehabilitation stay or on vacation. My ten-year-old son became unpredictable for himself and his surroundings. Our only world has become a tiny, constantly destroyed apartment and a guarded playground with the only entertainment for Łukaszek - a sandpit. He is not interested in anything he did until the time of illness - no fairy tale, movie, fun, arranging blocks, puzzles, games. Absolutely nothing. I saw that my son is getting worse every day.
Nobody in Poland wants or can help him. Savings were spent on numerous visits to neurologists, immunologists, psychiatrists and other specialists who did not know the cause of the deteriorating condition of the child. In the last year Łukaszek was hospitalized several times in neurological hospitals in Warsaw and Poznań. He bravely underwent a series of specialized tests, which he was very afraid of (including puncture, resonance, etc.). He was diagnosed with PANDAS Syndrome, Autoimmune Pediatric Syndrome Neuropsychiatric Disorder after Streptococcus infection. This streptococcus can be anywhere in the nose, eye, anus, tonsils, etc. Łukasz's immune system is not working properly. Antibodies directed to fight the bacteria, instead of fighting them, confuse and recognize the cells of their own body as an enemy. In the case of this syndrome, they attack the brain cells (nuclei of the base of the brain), which are responsible, among others for behavior, emotions, motility, hence obsessive-compulsive disorder, behavioral changes, aggression, etc.
The implemented treatment in the form of antibiotic therapy did not bring improvement. No other treatment was offered to Łukasz. In the case of chronic inflammation of the brain, when the symptoms of the disease are so severe and last as long as my son's, the only thing left is more invasive treatment as a last resort treatment - intravenous IVIG immunoglobulin infusions. This is currently the only rescue because untreated Pandas causes irreversible permanent brain damage. It should be emphasized that this is not a mental disease, although the symptoms would indicate it, but a rare, chronic and severe neurological disease, little known, which is why it was so difficult for me to get the right diagnosis and get to the right specialist.
In July this year, Łukasz underwent a number of further tests, unfortunately in the private Clinic of Neuroimmunology in Kiev, which confirmed his diagnosis with Pandas. Treatment in Kiev is cheaper and closer than overseas, where such cases are also successfully treated. Dr. Malcev from the Clinic in Kiev, leading Łukasz, specializing in neuroimmunology, offered treatment in several stages, giving hope, however, confirming that the case of Łukasz is severe and complicated. Treatment must be started now, because Łukasz has current research from July 2019 and based on it the doctor offers treatment. However, the cost of the therapy itself is estimated at over 100,000. zł. For me, a not working mother, a tormented mother, this is a huge sum. I am begging you for help. For Łukasz and I this is the last chance for a normal life. He is only 10 years old, and this is not what his childhood should look like.