Rare case

Vitaliy Galytskiy is 12 years old boy from Zhytomyr city. He is very sick. He has one of the rearrests diseases in the world – paroxysmal nocturnal hemoglobinuria. This diseas is caused by damaged gene. Because of this bone marrow cannot function as it supposed to do and does not produce healthy cells. It all causes heavy hemolytic crisis, acute hepatic failure, suffering and big risk to not survive another crisis. Vitaliy desperately needs bone marrow transplant from unrelated donor. We will send the boy to Piza, Italy for the treatment. The cost is 122 000 euro.

Chances to get this disease are very low, only 1 to 500 000. Patients with this diagnosis periodically have hemolytic crisis and red blood cells are destroyed. It usually happens at night. That is the reason of the disease’s name. It means that sleeping Vitaliy has big “explosion” in his blood and red blood cells, that are responsible for carrying oxygen, die. Damage happens faster than new cells can be produced.

During the crisis Vitaliy turns yellow, has acute stomach pain and fever. During last crisis he was step away from kidney failure. Boy had urgent hemodialysis in OHMADET department of toxicology and luckily his kidneys now are working again. Kidneys are damaged because some amount of red blood cells gets to the blood stream. We are not sure that next crises will not hit kidneys again and destroy them.

Frankly speaking, this last crisis has been the hardest so far. Besides physical suffering and fear, Vilaliy was hurting emotionally because he did not see his mother. He spent 5 days in intensive care unit practically alone. Doctors let the mother to come and see him only for 30 minutes. Vilaliy was very upset with his mom, he cried a lot and told her that it is all her fault that he’s got to such horrible ICU. ICU, without any light, and where it is impossible to understand if outside day or night. ICU, where little kids either crying all the time or unconscious.

- Mom, those kids were feed with fruit-sugar. I have never seen such thing before.

Vitaliy was very scared for himself and for others too. He is very kind boy. One time his classmate stole money from his home. Money were for Vilaliy’s treatment. Vilaliy forgave his friend and asked mom to let him come to visit again. People are more important that money.

Health problems have begun in 2012. Doctors were able to determine final diagnosis only last year. Oncology, anemia, myelo-dysplastic syndrome, preleukemia (paroxysmal nocturnal hemoglobinuria can trigger leukemia) – doctors tried all possibilities. Now the enemy is known but is stronger than ever.

At first crisis were not so frequent, just ones per year. Then they started to occur every six months. Then something terrible has happened and crisis came again after just one month in December last year. Ones per month is the frequency that is common for severe form of this disease. We believe that we still have time to send Vilaliy to Italy before the occurrence of next crisis. Let’s all help him. People are the most important.

Name: Vitaliy V. Halitskyi, born 02.07.2003

Location: Zhytomyr

Diagnosis: paroxysmal nocturnal hemoglobinuria