Why has been set up this Internet site for our daughter Monika?

To put the answer into one single sentence is not enough.

The website was launched in 2009 and the main reason for the creation was our daughter’s health condition and related need to get the information about the similar cases and the need to finance all the expenses linked with private medical treatments, physiotherapy and all kind of special aids that are not covered by the Public Health Insurance.

From the age of four months Monika is under regular control and care of different specialized doctors and although she was 5 year old in July 2012, she is still not able to sit, to crawl or to speak. According to the doctors Monika has not yet reached the level of a one-year old child. In October 2010, after 3 years of various examinations and tests the doctors have finally confirmed the diagnosis - mitochondrial encephalopathy. Considering the nature of this disease and the findings of atrophy of the cerebral white matter causing overall psychomotoric retardation, muscular hypotonicity/spasticity (hypertonicity), the doctors are unable to set an exact prognosis as to our daughter’s future development. Unfortunately the mitochondrial diseases are degenerative and there is currently worldwide no efficient treatment to this disorder. From the longterm view the doctors predict slow worsening of Monika´s health condition. Moreover in October 2011 following a severe seizure and the EEG record epilepsy has been definitely diagnosed.

The detailed description of Monika’s development from the birth till nowadays can be found in the „Diagnosis and treatment“ section.

All the public medical care that has been provided to our daughter up to now is judged as more than good. Nevertheless as the time passes by and the health condition of our daughter is improving very slowly, we – parents, have decided to try other forms of treatemnt so far not available on the Czech territory. We really believed that the sooner we find a method how to further improve her condition the higher chances there are that she will at least partially reach the level of „healthy“ children.

At the turn of November and December 2009 Monika went through special treatement focused on physiotherapy in the ADELI Centre in Piešťany, Slovakia. It was our first experience with such kind of therapy and we have payed all the expenses from our own funds (approx. 2 600 EUR). The ADELI physiotherapy had a real positive impact on our daughter´s health condition and therefore at the turn of April and May this year Monika spent another 14 days there. This time the stay was largely covered from financial support provided by sponsors. During October 2010 unspecified seizures have appeared repeatedly and Monika was again hospitalised at the department of child neurology in Thomayer University Hospital. The EEG examination has showed unspecified image that can indicate either some kind of behaviour disorder or specific symptoms of epilepsy. Unfortunately intense epilepsy seizures have appeared during 2011 and we had to start with specific medication. For that reason and with regard to the diagnosis (mitochondrial encephalopathy), we have decided to suspend temporarily the planned treatment in ADELI Centre in Piešťany. This treatment that is focused on very intensive physiotherapy may represent high risk of seizures.

In this connection we have also tried three times the special treatment of Dr. Eva Augustinova Refaat in Hurghada, Egypt. First time (2009) we have spent two weeks in Hurghada and if we compare Monika’s condition before the trip we believe that there has been an improvement – she is more relaxed and more reactive towards different objects. Due to those slight changes we have decided to repeat the stay in 2010. Just for information the first treatment have cost all together (the cure, living expenses, travel expenses) around 3 300 EUR for two weeks and during the second one all the expenses have reached 3 850 EUR. In June 2011 we went there for the third time and in this case all the costs were covered with the help of our parents and other family relatives. We already booked another stay in Hurghada for 2012 but considering all the new findings related to Monika´s health conditions we decided (after the consultation with Dr. Augustinova) to cancel all our plans concerning the treatment in Egypt.

This is the reason why those Internet pages have been set up. In our effort we were strongly supported by a „not-for-profit organisation“ AveVia o.p.s.. At the same time we would like to mention the significant help of the foundations (Foundation Syner, Foundation Naše dítě, Foundation Sluníčko pro děti and Foundation J & T) and last but not least we got strong support from our families and friends.

We believe that this webpage will provide sufficient information to everyone willing to help us and at the same time this is the way how to address those of you who have similar experience and can provide us with useful information or advice.

We will appreciate any kind of reply and in case of questions or comments we will be happy to react upon.

Thank you, Petra Rohovská and Pavel Rohovský,

2/12/2012 in Jesenice