On February 3, 2025, a long-awaited daughter was born in the Khalilov family. The pregnancy went smoothly, nothing foreshadowed trouble, but baby Nubar was born with a rare genetic disease — epidermolysis bullosa (EB).
With this diagnosis, the skin is so vulnerable that it can be damaged even by a light touch or its own movement. Patients with EB are figuratively called "butterflies". The baby is growing up, learning to reach for the toy, and will soon start turning over and crawling – each new step can lead to injury.
In epidermolysis bullosa, proper therapy and care from the first days of life reduce the risk of severe complications in the future. Nubar needs special anti-traumatic bandages and soft bandages that protect her like a second skin, as well as special ointments and creams. All this is expensive and the baby needs it every day.
Oisha, the little "butterfly," needs similar help.
With proper care, "butterflies" can live an active and full life, like all children - play, explore the world, study full-time at school.
We will help the little ones grow up with a smile, not with tears, they really need our support.
Субхан Аллах, сладенький, пусть терпение этого испытания будет тяжёлым на весах благих деяний в Судный день у всех кто им поражён и их опекунов, и поможет войти в Фирдаус без расчёта, амин.