Humanitarian Foundation BUDI HUMAN - Aleksandar Šapić

raises funds for Aleksej Knežević (2023).

Aleksej was born after the first orderly, controlled and maintained pregnancy,  in the 41st gestation week, naturally. After birth, extensive erosions were observed in the lower legs, right upper arm and left ear. It was immediately revealed that Aleksey suffers from a serious and rare skin disease known as "butterfly children" disease (Dg Q81.2 Epidermolysis bullosa hereditaria dystrophica in obs.) On the eighth day, he was transported to the University Children's Clinic in Tiršova for treatment and then to the Clinic for dermato venereology.

Aleksej's skin is very sensitive, so the slightest touch causes great damage. As a result of repeated changes in the hands and feet, the nail plates of some fingers were lost and the toes of the right foot partially joined. There are zones of atrophy and congenital absence of skin on the lower legs, knees and dorsums of the feet.

Since birth, Aleksej has been faced with wounds all over his body and mucous membranes, he suffers great pain every day, and since the disease is unfortunately terminal (with an average life expectancy of less than 30 years), significant financial resources are needed for gene therapy with the medicine Vyuvek produced by the company "Krystal Biotech"  which has been applied in the USA since May 2023, and funds must be raised as soon as possible.

The disease also requires daily, very complicated, care (special bandages, creams, clothing, nutrition) as well as specialist medical examinations. Dressing, which must be done every day, lasts an average of 2 to 4 hours, and is necessary to prevent complications caused by infections. All these costs exceed the income of Aleksej's family, so they are appealing to everyone who is able to help with their donations so that Aleksej receives the necessary therapy as soon as possible.

Funds are needed for gene therapy with the medicine Vyuvek, specialist examinations, operative procedures, costs of hospital treatment abroad, medical consumables (special bandages and plasters, medical cosmetics), genetic analyses, travel expenses and accommodation costs during the hospital treatment.

For Aleksej's future without pain! Let's be humane!

Let's help Aleksej!