20 June 2016
From his Mother’s letter:
Roma is two years old already. For almost a year our boy has been experiencing the feelings that children should not get — they are pain and suffering. Doctors always have to conduct analysis and carry out others unpleasant procedures; thus, our son starts crying as soon as he sees a white coat. Because of it we had to get rid of all white shirts — Roma is that scared of them. We have to spend in hospital the better part of time, but, unfortunately, the doctors’ efforts have so far been to no avail. Meanwhile, every day of my son’s life is precious.
Roma suffers from a rare illness — Pelizaeus-Merzbacher disease. The only treatment in our case is hematopoietic stem cell transplantation. However, no one Russian hospital has so far agreed to perform the operation. Some of the hospitals do not introduce a quota in the nearest months, others claim to be lacking in experience in performing such an operation. There are also hospitals which try to assure me that my son is terminally ill, as the disease is incurable. We have worked out an agreement on the operation with several hospitals abroad, and have chosen Fortis hospital, as the operation there will not be that expensive. Still, we do not have enough money to pay for it. I am a housewife, my husband is a policeman; we rent a flat. There are two ways for me — to see my son dying day after day or to do my best to save him, to implore for help. I beg you to help me to save my child! We, his parents, are also dying every day together with our boy. Fortis hospital is ready to perform the transplantation immediately; the only obstacle here is the money — USD 75 000.