Date of birth: 13.06.2020
v. Sosonivka, Kharkiv region
Diagnosis:
Epileptic encephalopathy (West syndrome), period of medical remission, dystonic tetraplegia, motor disorders according to GMFCS classification of level IV, hand function of level IV, systemic underdevelopment of speech, delayed psycho-linguistic development, talipes equinovarus (TEV), paralytic kyphoscoliosis, hypermobility syndrome, fatty acid metabolism, secondary mitochondrial dysfunction, congenital lactose intolerance, glutaric aciduria type II, functional constipation.
The beginning of Oleksandra’s life was not easy – her mother’s pregnancy was marked by toxicosis and hypertension, and the birth was complicated. After birth, the child could not express her feelings with a loud cry. Vaccinations were performed in the hospital: BCG, HBV and Kanavit. After being discharged from the hospital “healthy”, the child spent some time at home. However, the first days of his life were full of unknown and disturbing moments.
One night, an unexpected event happened when the mother suddenly jumped out of her bed after hearing her daughter scream. The child was screaming at the top of her lungs, but the body was rolled into a “bagel”. This was one of the first symptoms of a terrible disease that the family did not even suspect. After consulting with doctors, they were told that it was just a “tummy” and everything would pass.
However, at the age of three months, the baby had to spend almost a month in the hospital with frequent seizures, where he was diagnosed with epilepsy with localized tonic-clonic seizures. Although the mother hoped that the right treatment would help, the child’s condition deteriorated.
The news about their daughter’s condition became alarming when they were admitted to the hospital again at the age of five months. The child was experiencing frequent attacks of tonic and clonic seizures, sometimes with loss of consciousness for five minutes, with the head twisted to the right and a series of hemi-convulsions for up to two hours. The number of such seizures could reach 60-70 times per day! It was a time of intense search for solutions and anxious uncertainty for Sasha’s family.
Her treatment included a series of examinations and the use of antiepileptic drugs. However, a key moment in her therapy was the introduction of the drug Sabril, which at the time proved difficult to find in Ukraine. Thanks to the tireless efforts of her mother, this drug was obtained and included in the treatment process.
Unfortunately, the diagnosis of the little wrestler revealed a number of complex conditions, such as epileptic encephalopathy (West syndrome), dystonic tetraplegia, motor disorders according to the GMFCS level IV classification, delayed psycho-linguistic development, paralytic kyphoscoliosis, hypermobility syndrome, fatty acid metabolism, secondary mitochondrial dysfunction, etc.
The life of every child with a disability is an ongoing story of desperate struggle and unbreakable hope. Among these extraordinary children is little Sasha, whose early childhood was filled with hospital visits, rehabilitation sessions, and the search for ways to improve her condition.
The disease that struck Sasha took away her acquired skills, made her lethargic and apathetic to the world around her, even to the pain of numerous injections. But over time, thanks to her family’s unstoppable resilience and perseverance, hope began to emerge. The number of seizures decreased, and daily efforts helped Sasha gradually regain her lost skills.
At the age of three, Sasha was diagnosed with additional diagnoses related to her vision, requiring her to wear special glasses and regular eye examinations. This added another layer of complexity to her already busy treatment schedule.
At the Kharkiv City Children’s Hospital No. 5, where Sasha regularly undergoes rehabilitation, the team of specialists has become part of her extended family. Physiotherapists, speech therapists, massage therapists, psychologists, and correctional educators work with Sasha.
Despite all the obstacles that life has put in front of little Sasha, her spirit is not broken. Daily struggles with basic functions such as walking, sitting, speaking and chewing are a reality that requires tireless support and assistance. At the moment, Sasha is still dependent on diapers and adaptive equipment, such as a custom-made corset that needs to be updated every six months due to her growth, and hingeless orthoses to support her limbs.
However, it is important to emphasize that Sasha is not just the sum total of her challenges. She is an emotional, lively girl with a bright personality. She loves music, musical toys, enjoys the opportunity to draw with her mother’s help, and watches cartoons with great pleasure. Her hobbies and interests bring joy not only to her but also to everyone around her.
To support Sasha’s health and development, the family constantly needs help.
This includes:
✔️ regular rehabilitation courses, which she undergoes 4-5 times a year at the Kharkiv City Children’s Hospital No. 5;
Treatment includes daily intake of vital medications:
✔️ Sabril 500 mg – 625 mg in the morning/ 750 mg in the evening,
✔️ Topamax 25 mg – 2 times a day,
✔️ Clonazepam IС 1 mg – 1/8 of a tablet twice a day,
✔️ Forlax – 5 grams per day.
This family needs your help!
Join our project to help children with disabilities, “Happiness in Every Family”!
For more information, please call +38 0 66 7000 177 or e-mail web@kids2kids-fund.com.
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