Humanitarian Foundation BUDI HUMAN - Aleksandar Šapić

raises funds for Tara Jovanov (2024).

Tara was born in April 2024, after the second, regular and controlled pregnancy. Immediately after birth, it was observed a complete lack of skin on the lower legs and feet , as well as extensive erosions in the area of ​​the glutes, thighs and forearms, bullous changes in the oral cavity on the gums, tongue, back wall of the pharynx. Two hours after birth, in a very serious general condition, she was transported to Institute for Healthcare of Children and Youth of Vojvodina, where a genetic analysis determined that Tara suffers from a serious and rare genetic disease called epidermolysis bullosa, known to the public as the disease of "butterfly children".

The diagnosis Q81.8 Epidermolysis bullosa Simplex gravis (Dowling Meara in obs) indicates that Tara's subtype is very rare.

Tara spent the first 56 days in the neonatal intensive care and therapy unit, where her life was endangered several times. After that, with two new diagnoses P36.3 and P96.2, she was transferred to the General Ward with her mother.

Tara's skin is so sensitive that damage in the form of open wounds occurs due to the slightest touches and skin friction. Currently, 70% of the skin is covered with wounds. As a result, she is prone to frequent infections, anemia, it is very difficult to gain weight, and her immune system is weakened despite supplementation. Also, constant application of antibiotic therapy  and it  is necessary to treat her pain too. Over time, various deformities appeared, as a result of which she will need rehabilitation in the following period, as well as various therapeutic treatments. Her general condition continues to require strict isolation with medical care under full protective equipment. Parents and medical staff make contact with the baby using surgical gloves and a protective mask, in order to avoid the possibility of bacteria, viruses and the creation of new infections.

In the coming period, it is planned to be transferred to the Institute for Dermatovenerology for treatment, after which Tara will come home, from which time Tara's parents will take care of her.

Given that treatment costs are very expensive and that treatment requires very specific and serious care (special bandages, plasters, medical creams and ointments, medicines, clothing, nutrition and supplementation) all in order to prevent further complications caused by infections, it is necessary for her to have specialist medical examinations, rehabilitation, physical and other therapies. Tara's parents need help because prevention and quality care are necessary parameters to prevent  the disease from progressing and for Tara to have as bright a future as possible.

Funds needed for medicines and medical consumables, special nutrition and supplementation, specialist examinations, laboratory analyses, genetic analyses, medical devices, rehabilitation, physical and other therapies, special suits, operative interventions and treatment costs abroad.

For better days, for Tara’s joy. Let's be humane!

Let's help Tara!