Diagnosis of the child
Hypothalamic hamartomas (HH) are rare, tumor-like malformations that occur during fetal development and are present at birth. They are non-progressive lesions and do not expand, spread or metastasize to other locations. They grow in proportion to normal brain growth, and consequently their relative size to the rest of the brain is the same for the lifetime of the patient. There is tremendous diversity in the type and severity of symptoms from patient to patient. However, symptoms are apparent during childhood in the overwhelming majority of patients. Two clinical phenotypes of HH are recognized: 1) central precocious puberty and 2) epilepsy and related neurobehavioral symptoms.
The purpose of the collection
an operation in the national hospital in Japan
History of the child
Maryana has a black-swan diagnosis: hypothalamus gamartoma.
Except this diagnosis the girl has behavioural violations and uncontrollable attacks of violent laughter during which Maryana has sensation of fear. Frequency of these attacks sharply increased for the last year and it can be irreversible consequences, for example a stop or regress of mental and intellectual development. Therefore Maryana needs a surgery.
Maryana’s parents made a choice for National hospital Nisi-Shinjuku in Japan, the city of Niigata. This hospital specializes in the treatment of hypothalamus gamartoma and doctors have 15 years’ experience of successful treatment by the method of radio-frequency thermocoagulation. This method is recognized as the most effective today.
The only barrier is the price of the operation. Maryana’s family independently raised a part of funds, but parents are not able to pay treatment completely.
«Maryana learned to count, she likes drawing, playing, dancing and posing on the camera. Maryana is very cheerful and sociable child whom there is a wish to call really adult every time when Maryana in the morning and in the evening independently controls intake of medicines and keeps the calendar of attacks, specifying at us, parents, the attack fact, its duration, there will be it short or long – and all this in order that it is correct to note attacks in the calendar according to the recommendations of the neurologist.», — Maryana’s parents share.
Only together we can help Maryana to realize a chance of happy life!
Collecting is closed (05.04.2019).
16 902 USD was collecting and the deficient amount the parents collected independent. Money for Maryana Pauliuchenka will be redirected to Sofia Kolesnyova.