2024-08-06 14:35:57
6-year-old Christian from Berkovitsa needs funds for therapy. His mother, Silvia Slavcheva, has created a campaign to raise funds for her child.
Here is what she wrote:
Hello!
My name is Silvia Slavcheva and I created the fundraising campaign for my child Hristiyan. Christian is almost 7 years old and has a developmental delay – at the moment he still does not speak, he has deficits in general and fine motor skills. His condition is defined as moderate developmental delay – physical, cognitive, emotional, social. Already in the prenatal period, it was found that there was a curvature of both legs, which was due to a shorter Achilles tendon. From the 20th day after his birth, we started treatment according to the Ponseti Method with plaster immobilizations. Surgery on both feet was done after 6 months. Until the age of 1. we put special splints, which in turn significantly limited his motor activity, and even then his condition was defined as retardation in psychomotor development.
During the first two years, we worked with a wonderful person and specialist in our hometown, who helped us a lot with rehabilitation. Christian also has congenital strabismus (distortion of the eyes), which we treated for the first two years with glasses with special prism lenses, and shortly before he turned 3, he also underwent an operation to correct his strabismus. Since birth and up to now, we have had numerous examinations, consultations, hospitalizations and tests to diagnose his condition. We performed whole genome sequencing, analyzing in detail more than 1/4 of all his genes that could be associated with developmental delay. A year ago, a genetic mutation of a gene that could be responsible for his condition was found and confirmed with a second study. But at the moment there is not enough information about the consequences of the disorders in this gene, as well as the condition not classified as a specific syndrome.
The treating medical team again made recommendations for intensive activities with a speech therapist, psychologist, occupational therapist, physiotherapist, kinesitherapist, special pedagogue. We found all these specialists in just one place in the multidisciplinary team of the Mirte Dilkozem Therapy and Rehabilitation Center in Sofia. The team is specially trained according to Mirhat Tekin’s methods, which have been proven effective for children with developmental problems. The center also has the necessary material base to conduct 11 types of therapies in one place. This fall, Hristiyan turns 7 years old and was supposed to be enrolled in first grade, but given his difficulties, he was delayed from starting school by one year by order of the RCPO – Montana. He is extremely warm in his relations with people and children, very smiling, social and kind. I believe that Hrisi has more potential and through the therapies offered by the Mirte Dilkozem Therapy and Rehabilitation Center, he could fit in with his peers at school. For almost two years, we have been conducting research and consultations for the treatment of the so-called biomedical approach.
So far, we have tried everything in our power to conduct tests to diagnose his condition. The human genome, however, is so comprehensive that not all genes have been sufficiently studied, and not every disordered condition is currently defined as a disease or syndrome to be treated with medication.
I myself was recently diagnosed with a malignant tumor with metastases, the cause of which is a genetic abnormality, which for unclear reasons occurs at a certain moment in the interaction of genes. In addition to putting me on temporary disability, this circumstance is another reason for my desire to do everything possible to develop my child so that he can handle himself in social and school environments.
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