5-year-old Mariam got orientally large, maturely deep eyes. One could think he may drown in them! “Mariam” means “beloved by God”, maybe that’s why He gifted the girl with such an amazing mature look?
When Mariam was born in 2008, she seemed to be healthy. At 3 months, she was vaccinated for the first time, and at 4 months, sudden festers appeared at the site of BCG vaccination. Soon Mariam’s parents noticed that her axillary lymph node started to swell. The parents immediately searched for medical attention, and Mariam was diagnosed with BCGitis. The baby was treated by a chest physician, but the treatment didn’t bring any results…
When Mariam turned 1 year old, she underwent a surgery for removing a lymph node from the left axilla. A few months later lymph nodes got swollen again. Mariam spent 3 months in a tuberculosis hospital. After discharge from it she started having fever, and in a few more months cervical lymph nodes started to swell.
In April 2010 a rash suddenly broke out on the girl’s legs, so she was hospitalized, followed by her mother. She was diagnosed with salmonellosis. Mariam was prescribed with a treatment, and the rash gradually began to disappear, but at the end of the summer it broke out again. This time Mariam was taken to the Russian Children’s Clinical Hospital (RCCH).
From the RCCH she was transferred to the Department of Immunology at the Children’s Clinical Hospital #9, where she was finally diagnosed with primary immunodeficiency, interleukin-12 receptor deficiency. The diagnosis was confirmed by the tests carried out in France and the USA.
Mariam was prescribed with Interferon gamma treatment. Mariam needs to take the drug on a regular basis, otherwise her illness will progress. Without the treatment, exacerbations of Mariam’s illness start to happen: fever, swollen lymph nodes, pain in legs, and difficulty in walking. Regrettably, the further, the greater will the disease progress, with a risk of profound disability.
Mariam's family is originally from Georgia, but it has lived in Moscow for over twenty years. Her father is an auto mechanic, and the mother is a pediatrician. To look after ill daughter, she had to quit her job.
We hope very much, that we will manage to help Mariam, and maybe her look will become a little softer and more mischievous – such as happy and healthy children usually have. Because in other aspects her personality almost doesn’t differ from them at all: Mariam loves to play with her brother and sister, listen to fairy tales and narrate them together with her mom, watch cartoons about Luntik, go for a walk, and play in a sandbox. Mariam dreams of becoming a doctor when she grows up.