Parents' Letter (January 23, 2012)
Dear Chance Foundation!
I would like to start my letter with gratitude — what you are doing is a miracle! It is a real miracle when one has almost no hope and is in despair and suddenly a hope that the person you love most of all in the world will get help emerges. For a child is what the mother lives for. And it is extremely hard and painful to watch the sufferings of your child and realize that you can’t do anything.
Merely by accident I saw your site at the Internet and read the letters about parents’ grief and thank you letters by parents like us. They say, nothing happens by accident. May be there’s also a chance for us.
The day of June 21, 1997 is the happiest day for our family: our healthy and handsome baby boy was born. He was a robust baby. He started walking at 10 months.
We cheered at his every step, at his first tooth and unintelligible funny words. He was developing just like other kids.
In May 2006 our boy’s right hand started to get numb, we were alarmed. All necessary tests medical check ups were performed. It turned out that everything was OK with Antosha. My husband and I decided to bring our son to the Crimea where our relatives live. Anton often got sick and we wanted him to spend some time at the seaside. That’s where our horrible dream began
5 days later after our arrival seizures set in. Anton’s state was getting worse and worse, his arm got numb more and more frequently, the seizures were getting more and more severe and repeated every 5-15 minutes. In the train, on our way home, the interval shrunk to 3-5 minutes. He was passing away, gasping for breath, vomiting A lady that was sharing the compartment with me wished me a lot of strength and patience when we were about to leave. I didn’t understand the meaning of her words then. I did not realize what was happening to my child.
Anton was admitted to Gomel regional hospital where he stayed for almost two months. IVs every day. The seizures never ceased. The child was taking anticonvulsory and hormonal drugs, headaches never stopped, his arm was not functioning properly. The child was examined thoroughly: MRT, EEG and US investigations were performed. Nothing was found out. Our baby became nervous and easily irritated. He gained a lot of weight. Anton was diagnosed with neuroinfection accompanied by convulsive disorder. When the frequency of seizures had decreased he was discharged. We made an appointment with Prof Shanko and went to Minsk. The professor came to a conclusion that the ordered treatment was correct, the neuroinfection had been present for quite a long time and the air of the Crimea had triggered the condition. He said that everything should be over by the time Anton became a teenager. Whether it was cold or trauma, or vaccination that triggered the neuroinfection, nobody has been able to establish so far. Every year Antosha is hospitalized, sometimes even twice a year because the frequency of the seizures increased. We brought medications from the Ukraine and Russia. We tried everything: alternative medicine, brought Anton to various healers, homeopathes, brought him to churches.
In 2011 we brought him to Moscow where he was examined by Professor Chadaev. He ordered different treatment — changed Depakin for Topomax, since Depakin had been blocking the effect of Finlepsin.
We have been trying to fight the dreadful disease for six years already. In the meantime the diagnosis changed several times. Sometimes there were gleams of hope: the seizures occurred less often, once they didn’t occur for half a year. And we thought that everything had stayed in the past, that our son had got better and we had won the disease. Alas, the miracle never happened. Anyway, my son goes to school though he misses a lot of classes. He wants to be like everybody else, wants to enter a University and become a programmer. But what can I do to help him? These damned seizures There are pillows by his bed because he has seizures 4-8 times a night. And his legs are all covered with bruises — he is a big boy and it’s hard for me to restrain him sometimes. Anton was diagnosed with epilepsy and was given a disability status. My son is 14 years old now. For six years he has been living an impaired life. And together with him we suffer greatly thinking about his future. It’s terrifying to watch horrible things happening to the dearest creature and being powerless.
And still it seems to me that I have forgotten to write you about something, have missed some details.. God alone knows how much thoughts go through my head and how much pain I have to endure. For while writing such a letter you live through everything again. But I know for sure that to cure your child you have to know what caused the disease and the correct diagnosis.
When I read the parents' letters on your site I realised that there's a hope. I read about children having the same symptoms Anton has being sent to Germany and getting some kind of help — for some treatment with druds had been ordered, and some had been told they need a brain surgery. I realised that something can be done for Anton.
Our son is 14 now. He understands everything and hopes that he will stop having uncontrollable seizures and will be able to go to school and socialize with his friends without fear. Time is passing by and I am afraid that in some time it will be too late.
I see the only way out — examination and treatment in Germany. That's why we are asking you for help with hope for recovery. Our son was born absolutely healthy. We did everything we could. And I thought there was nobody else we could ask for help. I believe this is our last chance for being diagnosed correctle, finding the cause of the disease and in future — for recovery.
I don't know the answer for our request yet, but I am grateful to you anyway because now we have HOPE.
Sergei, Irina and Anton Bychkov