“The past six months of our lives have been extremely busy – just like the past five years. Although the struggles have been similar, we have received lots of important information. After an overnight video monitoring session, recommendations from the epileptologist we started to have discussions with foreign clinics. We have spoken with hospitals in Germany, Czech Republic, Israel and Japan. While I was looking for the best clinic, I was also looking for a family that already had experience with such a procedure. It is imperative to me that I know the results of previous operations so that we are in a better position to make such a serious choice.
Unfortunately the parents that were willingly to talk to me described their experiences did not all have good experiences. Some of the children’s epilepsy went away, but some children became autistic. I really do not want such an outcome for my son and so I continued to search and search for specialists, medical consultants and doctors. One doctor in France gave me a new direction in the search for a treatment.
The fact of the matter is that epilepsy, cerebral palsy, tetraparesis and many other similar diseases are a consequence of a rare brain disease. There aren’t many epileptologists, especially if you want to find a good one. Unfortunately there are few in Ukraine and not that many more around the world that know how to treat such diseases. Luckily I was able to find a good rehabilitation specialist that works with children. So far we have seen some positive results.
In August Arthurhad his first round of rehabilitation in the city of Boryspil. Arthur was able to make it through all of his exercises even though I know how difficult it is for him. On the third and fourth day of rehab his temperature went up to 38 degrees Celsius because of the difficult exercises. In addition to the physical therapy, we had consultations at the neurology unit at Ahmatdet and gastroenterologist and the gastroenterological center in Kyiv. Arthur has an issue with gaining weight, which means that he has less strength and energy to get better. If he does not get stronger he will not get better. In September we will start the second round of rehabilitation.
In November we will undergo the third round of rehabilitation, diagnostic tests and treatment with the Tomatis Method. After the third round of rehab we hope to see results. If Arthur is to get healthy we cannot take a break between the treatments. I understand how times are tough for many people right now. But you, our dear helpers, cannot even imagine how the help you provide changes not only Arthur’s life, but also the lives of countless other children. Arthur’s success could be an example for many children and their parents.
I have lived for quite some time by the following principle:
Don’t be afraid of anyone or anything, keep moving forward bravely and believe in the best.
Don’t be afraid of anyone or anything
If you need help – ask
If you fall on your knees – get up
Even if you do not want to live
Even if you feel pain – smile
Not seeing the end – keep going
I know, it is difficult to admit
But the whole point is to
NEVER be afraid of ANYTHING
And then happiness will enter my home.
We have limited financial means and cannot afford the treatments on our own.
September.
- Second round of rehab – 210 USD
- Anticonvulsants – 115 USD
- Sessions with osteopath – 31 USD
- Special dietary needs (PediaSure) – 58 USD
- Gastroenterology examination, special equipment – 46 USD
Total for September: 460 USD
November.
- Third round of rehab, lesson with speech language pathologist – 268 USD
- Transportation, accommodation in Boryspil – 153 USD
- Tomatis Method Diagnostics and treatment in Kyiv – 306 USD
- Special dietary needs (PediaSure) – 58 USD
Total for November: 785 USD
Thank you EVERYONE for your help, support and being here with us.”
