We are on the verge of endurance! The disease progresses, it destroys Tymek's body, and medicine in Poland is powerless! Neurologists in the country are spreading their hands helplessly. "Well, what can I do?" - that's all we heard.
Tymon has an innumerable number of tumors on the main routes of the Central Nervous System which causes great pain and blindness and cancer in further plans. They are largely inoperable and do not respond to chemotherapy, if you can imagine a bunch of grapes, tumors grow like a net, grow in and around the nerves, so I'm sure you understand that it can be very painful. Pain can come and go, it's like an electric shock that can suddenly happen when it suddenly knocks or at seemingly random moments.
Tumors, demyelination are extremely devastating the nervous system. Drug-resistant photogenic seizures (sensitive to light) are like an element that suddenly begins to rule over Tymon's entire body. Tears flow to our eyes, we become powerless, because we know that our child "slowly goes away". We see how much the disease has been destroyed him in recent years. The only place where doctors are able to properly diagnose our son and start treating him is the Kennedy Krieger Institute in the USA. Only there we got a chance to stop the another newly developing disease, which demyelination has started to create. Nowhere else…
The number of tumors (these tumors are unpredictable, slumbering but also ominous) causes the demyelination of the central nervous system, including the optic nerve, and consequently entails the consequences of other diseases, whose diagnosis must be as fast as possible. Doctors both in Spain and in Germany says unanimously: "Tymon suffers from second neurological disease due to other symptoms".
Such a big number of tumors often excludes chemotherapy and radiation, but you must control their size and frequency of pain. In the case of an ominous tumor, each tumor should be surgically removed. It's the only thing you can do. Medicine of the 21st century does not give light in the tunnel to the overall treatment of NF1.
Glioma of the pathway, cerebral gliomatose, photogenic seizures very sensitive to light, tumors of the central nervous system ... What else? Hundreds of other symptoms show some other disease. But what disease is it? Doctors in Poland and in Europe called full diagnosis of Tymon "a challenge". Ever since Tymon was born, we're wandering from one doctor's office to the next. Tymon's disease is like an unknown, which we solve piece by piece. The first reasons for anxiety arose when it was still very small. His son was not lying on his tummy, he was not playing with toys - as if he was completely uninterested in what surrounds him. When the children of his age began to speak, he was silent. We heard: autism, Asperger, delayed development, disabled.
The doctors were looking for a diagnosis, and our child's condition was getting worse. We noticed that Tymon began to be extremely aggressive, also auto-aggressive. Instead of talking, he had very slurred speech. He involuntarily strained his muscles, he made strange noises. We had to keep an eye on him all the time, because we did not know if he would hurt himself. In the kindergarten we heard more and more often: "Tymon needs a psychiatrist, his behavior poses a threat to other children". At about the same time, we noticed other disturbing symptoms - a tumor appeared on the back. Urgently, we were directed to resonance and oncology!
Central nervous system tumors have been detected - on the chest, thighs, hands, eyes, hands, buttocks, back. We have a diagnosis: von Recklinghausen's disease (Neurofibromatosis). Doctors from the clinic in Germany confirm. The world-famous specialist defines Tymcia as a "challenge". We learn, however, that a number of his behaviors are not related to von Recklinghausen's disease. There is something else ...
One day Tymon falls on the street, loses sight, gets paralyzed. We are looking for help urgently! Poland, Germany, Switzerland - all for nothing. We got a chance in Spain at the Institute of Epilepsy Research. Diagnosis: photogenic seizures, drug-resistant. These seizures are a form of epilepsy in which seizures are triggered by visual stimuli that form patterns in time or space, such as flashing lights; bold, regular patterns; or regular moving patterns.
It affects approximately one in 4,000 people (5% of those with epilepsy).Tymon gives strange sounds and muscle tense! Each seizure is destructive for Tymon's brain. We were suggested John Hopkins children's center and the Kennedy Krieger Institute, both in Baltimore, USA. A whole range of Tymcia symptoms may be indicative of early symptoms of multiple sclerosis or ADEM (acute disseminated encephalomyelitis).
Tymon' condition worsens at a very fast pace, and we still do not know what's wrong with him. Tymon sleeps a lot, he has no more strength. He complains of headaches, numbness in the right leg, nausea, and vomiting. There are days when he has a strong disturbed balance and he is not able to stand normally on his legs.
Our son's life eludes us and we can not help him! The von Recklinghausen disease kills the body along with demyelination but there is something else ... Every day we see how our son suffers. If we stay in the country, it can become the worst thing for us...then might be too late. Only an early diagnosis gives a guarantee that our son's happy life will not end too soon. Maybe our son suffers from Multi Sclerosis, maybe ADEM....these are doctors' suggestions. But so early diagnosed are 100% treatable! Almost we have another disease in hand. The soonest the better. So early diagnosis might prevent against further developing and there is a chance in USA...We have to go there.
Please, help us save our son. Thank You!