Humanitarian Foundation BUDI HUMAN - Aleksandar Šapić
raises funds for Elena Krstivojević (2019).
Elena was born on 20 February 2019 in Belgrade. She was the child born after a properly monitored high-risk pregnancy. At birth, she was graded (9) due to Pes equinovarus (foot deformity) which was treated and corrected with casts and physical therapies.
Apart from this problem, nothing else indicated that Elena had any problems until she was 11 months old, when the first delay in psychomotor development was noticed. After numerous visits to doctors, at the age of 24 months, she was diagnosed with a rare genetic progressive disease, Dg. Alpha-manosidosis, which affects 1: 1,000,000 newborns.
The disease is characterized by the inability of the organism to properly decompose complex sugars in the body cells. The accumulation of sugar in the body affects many body organs and systems, including the central nervous system. It is an extremely severe and progressive disease which, if left untreated, causes the loss of basic functions and is accompanied by many other health problems, such as hearing and vision problems, respiratory infections, liver, heart problems, mental retardation, severe bone and muscle abnormalities leading to premature death.
The council of the world's greatest experts on this disease, with which the parents are in direct contact, found that the best treatment for Elena would be to start enzyme replacement therapy with Lamzede as soon as possible, which is currently the only registered medicine for this disease and it should be available in Serbia soon. Enzyme therapy should slow down the progression of the disease, cleanse the body of accumulated oligosaccharides as much as possible (unfortunately the therapy does not penetrate the central nervous system). It is also necessary to do a bone marrow transplantation as soon as possible, because that is the only and best solution for that disease. If the transplantations were successful, the body would just start producing the enzyme that Elena lacked and she would be able to have a normal life. Her parents decided to look for a solution abroad because It is not a practice in our country to perform a bone marrow transplantation for this disease and children with this diagnosis have not yet been treated in Serbia.
Elena is still not able to walk independently or to speak, but despite all the adversities she faces every day, she is a cheerful and smiling girl who likes to play. Parents believe that their Elena can also have a happy childhood and a normal life, and that is why we all need to help her now.
She needs funds for bone marrow transplantation, rehabilitation, specialist examinations, cataract surgery, controls, physical, special education and speech therapy treatments, hydrotherapy, hippotherapy, laboratory tests, medications and supplements, as well as for travelling and accommodation costs abroad that require a lot of money. Her parents cannot provide her with all that, so they invite generous people to help as much as they can, so that their little girl grows up healthy and happy.
Together for Elena's healing! Let's be humane!
Let's help Elena!
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