Friends of the Belarusian Children's Hospice

At 10 months old, Valeria was diagnosed with encephalomeningitis. Surgery revealed a cancerous brain tumour which was removed but, sadly, Valeria’s brain had been damaged. Her father was unable to cope with his daughter’s illness and left the family.

Valeria was born in the Belarusian town of Slutsk on 18th June 2009. She was a healthy baby weighing in at 3.2 kg and for the first couple of years grew and developed normally. In 2011 she contracted a bad throat infection that led to complications and in May of that year she was diagnosed with rheumatoid arthritis.

The young parents were thrilled with their firstborn son, a healthy little baby, yet before he reached his first birthday it became obvious that something was not right. Alexei was diagnosed with Hurler Syndrome, a genetic disorder which is the severest type of mucopolysaccharidosis and affects 1 in a 100,000 newborns. 

Little Ksenia would not be alive today if it were not for Friends of BCH and, of course, BCH itself.  She was born in late December 2010 and for the first few months did not show any outward signs of the terrible genetic disease she had inherited.

On 1st September 2011, the day that most children in Belarus go back to school after the long summer holidays, the Belarusian Children’s Hospice took on a new patient, a little girl called Angelika.  She had had her 7th birthday in April and if it hadn’t been for her illness she would have been joining the other children who, at age 7, start school for the first time.  

Dasha Evtuhova was born in March 2008 with stenosis of the larynx (narrowing of the airway), pneumonia, an insufficient blood supply to her brain and abnormalities in brain function.   The Belarusian Children’s Hospice started to look after her when she was 2½ months old when she needed a tracheotomy. 

Daria Primakova was born on 3 November 2007.  The day before she arrived her mother’s blood pressure rose dramatically.  In the first hours after her delivery, all the signs were that the baby seemed well but by the second night she wasn’t sleeping and was crying a lot.  On day 3 mother and baby were allowed to go home but another three days later Daria’s mother noticed changes in her daughter’s facial expressions, her mouth and her eye were pulled to one side.

Artyom Pilipenko is five years old.  Not long after his birth there were worrying signs that not all was well.  At the age of 9 months, Artyom had bronchitis and started to have life-threatening fits.  He spent the next 9 months on a ventilator in an intensive care unit.

Nadia was born in December 2006 and was a much longed for first child. Nadia was immediately diagnosed with Patau syndrome, a genetic disorder. She was not expected to live for more than a month and was hospitalised at once.

Artyom has been unwell all his life. Shortly after birth he was diagnosed with childhood cerebral palsy and learning difficulties. Cerebral palsy patients are not normally sent to the Belarusian Children’s Hospice but when Artyom’s parents came asking for help they could not refuse.