Four-year-old Evelina has a rare genetic disease. Help her start walking and talking!
Evelina Zakharchuk has experienced developmental delays since birth. When she was one and a half years old, she was diagnosed with a rare genetic disorder called Rett syndrome. This disorder is linked to a mutation in the MECP2 gene and is very challenging to treat because it causes regression in the child's development at an early age, leading to the loss of speech and hand skills, as well as the appearance of characteristic stereotyped movements.
Evelina took her first independent steps at two and a half years old, but she still experiences impaired coordination while walking. Three months ago, one morning, Evelina was unable to stand for half an hour. Follow-up medical examinations and consultations confirmed a difficult and insidious diagnosis: muscular dystonia.
Evelina now finds it very hard to walk independently. She cannot care for herself and has also lost her normal speech because her skills have worsened due to the disease. She needs ongoing rehabilitation. Evelina's family is doing everything they can to help her get better—rebuilding her ability to walk, strengthening her arms, and regaining her speech. Please support Evelina on her journey to recovery and growth!
Full name: Evelina Zakharchuk
Date of birth: 07/01/2022
Diagnosis: Rett syndrome, X-linked dominant inheritance (OMIM 312750, ORPHA:778) (F84.2). Pelvic organ dysfunction. Severe delay of mental and speech development. Paroxysmal dyskinesia. Coordination impairment. Neurotic reactions with phobias.
The goal of the project is to raise UAH 30,000 to cover rehabilitation services at the Kozyavkin International Rehabilitation Clinic
DETAILS FOR PROVIDING CHARITABLE ASSISTANCE:
Recipient: Charitable Foundation “Charity Exchange ”Dobrodiy" EDRPOU 39308149
IBAN UA553282090000026002000025224 at AB “PIVDENNY” MFO 328209
Payment purpose: “Charitable contribution for Evelina Zakharchuk (project No. 1861)”
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