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 and for the first few months did not show any outward signs of the terrible genetic disease she had inherited.
On 1st September, 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 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. 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 a much longed for first child. Immediately after birth, Nadia was 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.
On 2nd September the Belarusian Children’s Hospice ‘hot line’ service received a call from the Mikhin family. The family were desperate for the hospice to help their baby, Artemy, who had been diagnosed at birth in August the previous year with Williams Syndrome which is a rare disorder caused by an abnormality in the chromosomes.
Olya is an exceedingly attractive and tough young lady. In her short life she has been through more than most people could bear in a long one. At the age of 12 she was diagnosed with sarcoma. The doctors told her that the only hope to save her was by amputating her leg as soon as possible. But Olya and her parents fought to the last to try to find alternative treatment.
Danil is 12 years old and football mad. Danil is a Chernobyl baby. His mother was in an area of high irradiation as a child. When we met him at the summer holiday centre, he was proud to demonstrate all the English words he knew and followed us wherever we went with a mischievous twinkle in his eye in the hope that we might kick a ball with him.
Misha is 18 years old and profoundly disabled. His family, like thousands, was relocated to Minsk in Belarus from their home in the exclusion zone. The zone demarcates the large area of the country heavily contaminated by the radioactive cloud produced when there was an accident in a nuclear reactor at Chernobyl in Ukraine in 1986.