Three-year-old Alfiya does not speak, but, according to her mother, she recognizes everyone and understands everything. She also smiles all the time. Despite everything. The baby was born “heavy” - that's what the doctors at the maternity hospital said. “Perhaps birth trauma or cerebral palsy” - these assumptions were later not confirmed. But Alfia was diagnosed with another disease - a rare genetic immune pathology, Aicardi-Gutierrez syndrome.
This is a systemic disease that has affected Alfia's brain, skin, liver, thyroid and other organs. The girl cannot hold her head up, sit, walk, talk and hardly sleeps - her nervous system is severely damaged.
Now it is incredibly important to find an effective and safe therapy for the little girl to stabilize her condition and improve her quality of life. To do this, doctors need the results of an expensive genetic analysis that examines the family genome. It will show exactly in which gene the breakage occurred and from which of the relatives it was passed on.
Dear tubers! We are opening a fundraiser to pay for this important diagnosis for Alfia and four other children with similar immune disorders. Let's work together to help the doctors cure our little sunflowers.
Альхамдулиллах, собрали нужную сумму