Even before Amir was born, doctors warned his parents that their baby would be developmentally delayed. A genetic syndrome, but what kind is a mystery that cannot be solved without a thorough examination.
No one in our family has ever had anything like this. I don't even know what it is. Distant relatives didn't get it either," says Kamila, Amir's mother.
The pronounced high forehead, the unusually wide bridge of the nose, and the distinctive brown eyes seem to be tilted inward. When Amir cries, his eyes puff up, and they have been that way since birth.
When the baby was seven months old, he went with his parents from his hometown to St. Petersburg for a complicated surgery. The surgeons worked for seven hours and twenty minutes, which was an eternity for his parents. After the surgery Amir spent five more days in intensive care.
"We could only stay at home for two months, and then we went to Moscow for another operation. My son had pus in his eyes, the doctors put tubes in his eyes. They told us that they had to install tubes to keep the tear ducts open.
Amir has two older brothers, Muhammad, five, and Abdullah, four. Abdullah often asks his mom and dad why Amir doesn't talk or walk. "We tell him that Amir is still small, when he grows up he will learn everything. And we change the subject. It's hard to explain," Kamila sighs.
So far, doctors do not know what exactly Amir has a genetic disorder. To find out the exact diagnosis and the correct treatment, they need tests. Parents struggle with one manifestation of the disease, and then another. Cysts appear on the baby's head, doctors have already removed one, but in its place formed two new ones. It is impossible to choose a proper treatment for Amir without genetic tests. You and I have an opportunity to support the family and help collect the necessary funds for the examination of the baby.
Verified by Tooba
Verified by Tooba
