Roman is 15 months old. He was diagnosed with Histiocytosis of Langerhans cells. When he was 3-4 month old, he had rash all over his body. For six months, his family could not find out what was causing the rash, despite many trips to the Regional Children’s Hospital in the city of Dnipro. Roman had numerous complications after he was misdiagnosed several times and medicated unnecessarily.
In February 2019 Roman was taken by his parents to the Regional Children’s Hospital in Dnipro again and the doctors believed that Roman might have a very rare disease – Histiocytosis. They needed additional X-Rays and medical tests to confirm. The X-Ray of Roman’s head showed that he had bone destruction of the skull. The family immediately returned to Dnipro for CT scan. It showed numerous defects of bone tissue in frontal, temporal and ophthalmic bones of the skull, spinal injury and almost complete absence of the VI rib. Biopsy and pathohistological research in Dnipro confirmed Histiocytosis of Hand-Schuller-Christian disease type. After the results were sent to Kiev, the diagnosis was confirmed: Histiocytosis of Langerhans cells. Within 5 days Roman’s fever went up to 39C and his rash got worse. A decision was made to start medical treatment immediately in Ukraine, and Roma began chemotherapy.
This disease is extremely rare -1 in a few millions – and for this reason, it is not researched well. Roman could not be diagnosed correctly for a long time, and he got multiple areas of bone destruction, “holes in bones”. His skull and vertebral column are injured and he has almost lost 6th rib – it was “eaten” by disease. Since this diagnosis is so rare, the doctors give no guarantee of recovery. In Dnipro, Roman was told he has 50/50 chance.
His family decided to send his medical history to different foreign hospitals, as some countries provide individual treatment of each case of the Histiocytosis, and not generic like in Ukraine. There is a risk that it can be a congenital disease. Doctors say if it is congenital, it responds less to a treatment. Roma has been forbidden to walk. No one knows what to do about his disappearing rib and injured vertebral column. It is necessary to continue medical research and to find effective medical treatment. Most likely Roman will need surgery to implant plates – the type of surgery that can’t be done in Ukraine.
Recently, the family received invitation from Children’s Hospital in Spain (Hospital Sant Joan de Déu). The treatment is very expensive and expected to last for two years. Roman’s family will appreciate any support.