For Bogdan and Pavle!
Humanitarian Foundation BUDI HUMAN - Aleksandar Šapić
raises funds for Bogdan (2007) and Pavle (2015) Marjanović.
Bogdan and Pavle suffer from a rare and severe hereditary disease - Lesch Nyhan syndrome.
Children are mentally preserved, happy and sociable boys but they are 100% disabled. The initial diagnosis for Bogdana was cerebral palsy, and only 6 years after the five-day blood-urinating and very poor kidney function, he was diagnosed with Lesch Nyhan syndrome.
Since then, he regularly takes a therapy for kidneys and for lowering the uric acid. Now he has a chronic kidney disease while kidneys function is also reduced .
Lesch-Nyhan syndrome is a severe, rare (1: 380000) hereditary disease, caused by the mutation of the HPRT gene. It is characterized by an extremely large auto-aggression, people with this syndrome often bite nails, and even the fingertips or the lower lip (sometimes they even ask to be tied to feel safer). They have no control over the muscles, a lot of unwilling movements, they cannot hold their bodies, very often they have stones in the kidneys.
The youngest brother Pavle has the same diagnosis as Bogdan. From his fourth month, he receives the same treatment as his brother, but the examination found that his kidneys were deteriorating too...
Brave boys need to go to hippotherapy, other therapies, defectologists, and speech therapists. It is also necessary to purchase the medicines ...
Help Bogdan and Pavle!
For Bogdan and Pavle's better childhood! Let's be humane!
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