Diagnosis of the child
Tuberous sclerosis is a rare genetic disease in which benign tumors are formed in various organs and tissues. The polysystemic nature of disorders gives rise to a wide range of symptoms: brain damage can cause epilepsy, mental deficiency; internal organs are affected – the kidneys, the heart, the lungs.
The purpose of the collection
treatment and examination in Technon Medical Center, Spain
History of the child
“My family suffered a great disaster, grief and misfortune – I raise the child alone (disability of the 4th degree). I have to stay unemployed owing to the need for daily care. The father of the child left the family and filed for divorce. Ares is ill along his father’s autosomal dominant line, which is confirmed by tests. And now my son and I live on the state allowance.”
Ares has a very rare and complex disease of tuberous sclerosis, in the form of tumors that can occur in the vital organs of the child’s body, affecting his development and the quality of its future life, unless timely treatment is undertaken.
“Now they have already identified multiple benign heart tumors in Ares, which require urgent prevention of their growth by medical treatment. Also, they revealed tumor formations in the Ares’s brain, which can be eliminated by expensive drugs that are not licensed in Belarus and therefore not procured.”
Any part of the boy’s body can be affected by tumor unless subjected to timely jugulation: eyes, joints, mouth, face, body skin, liver, lungs, kidneys, etc.
Ares is six years old, he does not speak, there are no life skills. In the Minsk Region, Ares and another child have such a disease, and only eight children in the whole of Belarus. Therefore, complex neurosurgical and therapeutic treatment with medication is not possible because of the lack of practice in treating this rare disease and expensive drugs.
“Spanish clinic Technon in Barcelona responded with a proposal to help my child. The necessity of urgent treatment of Ares abroad is confirmed by the medical document of the Neurosurgery and Neurology National Research and Practical Centre where he had passed inpatient examination. Besides his inability to speak, he is suffering from symptomatic epilepsy. All this is possible to be prevented until Ares has grown up to 7-8 years of age, as doctors say.
I kindly ask you to understand my deep grief and to help my son Ares. Please do not remain indifferent to us. I sincerely thank you all in advance for your kind heart.”