Two-year-old Sofia has a rare genetic disorder and requires specialized medical equipment to enhance her quality of life!
Sofia Rubanik was born healthy but started having seizures at four months old. After many medical exams, she was given anticonvulsant drugs and hormone therapy. When she was eight months old, she was admitted to intensive care with bilateral pneumonia, which was complicated by cytomegalovirus infection. After three months of intensive care and hospital treatment, Sofia lost all her acquired skills.
She is now two years old and has been diagnosed with epilepsy and a rare mitochondrial genetic disorder called oxidative phosphorylation deficiency. She also suffers from pseudobulbar syndrome, so she requires a medical suction device to clear her excess phlegm and mucus. This portable, battery-powered device should allow Sofia to walk outside and attend rehabilitation sessions.
Despite everything she has endured, Sofia remains very positive and always has a smile on her face. She enjoys working with rehabilitation specialists, loves getting massages, and attends speech therapy classes. She is currently learning to hold her head up, sit, and eat on her own. To keep progressing and enhance her quality of life, she also needs a special folding hammock seat for bathing children with motor impairments. Support Sofia on her challenging journey!
Full name: Sofia Rubanik
Date of birth: 03/02/2023
Diagnosis: Mixed tetraparesis. Secondary microcephaly. Delay in motor-postural and psycho-speech development. Epilepsy: infantile spasms syndrome, focal clonic seizures, and myoclonus associated with combined pathology. Plasma protein metabolism disorder. Combined oxidative phosphorylation deficiency.
The project aims to raise UAH 25,420 to purchase a BIOMED 7E-G1 medical suction device and a Vermeiren Pepi Pediatric Bath Chair for bathing children with motor impairments.
REQUIREMENTS FOR PROVIDING CHARITY AID:
BENEFICIARY: CF "DOBRODIY" CHARITY EXCHANGE
EDRPOU (National State Register) 39308149
IBAN UA553282090000026002000025224
PIVDENNYI BANK \ code 328209
PAYMENT DETAILS: "Donation for Sofia Rubanik (project No.1818)"
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