This little girl has made significant progress since joining the physiotherapy programme at the Belarusian Children's Hospice. The programme was devised by and is funded and overseen by Friends of BCH. Read about the project and how the children and their families have benefitted here.
The happy result of Friends of BCH recommending BCH as a partner to Healthprom in 2015, is that the hospice received funding from DfID’s Child Rights programme. This is how it has benefited one family.
Kirill and Lis live in a student dormitory in the city of Bobruisk. They have two children, a daughter Arina and Gleb, a younger son who is registered as profoundly disabled. It was proving impossible to carry on living in the cramped student accommodation. The young parents did the rounds of different hospitals with their son, one week at home and two weeks in intensive care, and sent their daughter to her grandparents. Lis said, ‘We used to see our daughter Arina only once every three months’.
Vicki Hughes, a long-time supporter of Friends of BCH, travelled with trustees to Minsk for the opening of the new children’s palliative care centre, Forest Glade. She met a very special family and this is her account of the visit.
It is hard to imagine the thoughts and decisions facing a mother newly diagnosed with lymphoma, from a family already struggling with other cancers, who finds herself newly pregnant. Yuliya, this mother, had to make the decision to halt her own chemotherapy for the sake of her unborn baby. Yuliya’s baby, Viktor, was subsequently born with severe breathing difficulties, poor motor control of his limbs and likely mental impairments. With a new baby and 11 year old Dmitry to care for and little family or partner support, the Belarusian Children’s Hospice became a lifeline of care provision, understanding and education that enables the family to stay together at home.
Pavel's parents wrote, 'The Belarusian Children's Hospice has given us a lot of support for our son Pavel over the last 10 years. He has a dedicated nurse and doctor and BCH provide him with medical supplies such as catheters, syringes, bandages, antiseptics and medicines. Our whole family enjoy social activities organised by BCH.
Pavel’s health has deteriorated in recent years but for the moment his condition is stable.
Thank you BCH.'
At the Belarusian Children's Hospice, the staff work tirelessly to make a sick child's all round quality of life as good as possible. This is the story of a special summer in the Tikhomirov family in the parents' own words.
‘On 15th August our daughter Lera, who uses a wheelchair to get around, set off for the first time in her life to have a holiday away from home. Her destination was the Stork Summer Holiday and Recreation Centre in Zabrodie about an hour’s drive from Minsk. The Stork Centre is part of the Belarusian Children’s Hospice and is a purpose-built complex for children and families in their care. Every summer, groups of children have the opportunity to meet other children there and have lots of fun together in the sunshine and fresh air.
Sergei is one of four brothers who live together with both parents. He is very communicative and likes being with people. Sergei cannot be left alone as he gets upset and starts crying. He is at his happiest when he is on someone's lap or in their arms and this is how he spends much of his time when he comes to BCH for respite care. At home, Sergei likes watching his elder brother playing computer games, sometimes for several hours at a time. The whole family turns around Sergei and his needs.
Tatyana comes from a one parent family. Despite being blind she knows who her mother and grandmother are and can tell when unknown or new people are talking to her. Tatyana reacts very well to the spoken word and shows her pleasure when she is praised. She learned to smile quite late but is now smiling more and more often and sometimes breaks into chuckles. She also smiles during tactile stimulation and loves having her hair brushed. Tatyana is 9 years old.
Yevgenia has just had her 5th birthday. When she was a young baby, she had an infection in her central nervous system and, shortly afterwards, viral influenza. Doctors diagnosed cerebral palsy and impaired cognitive function. At age 2, Yevgenia started to have epileptic fits and could no longer hold up her head, smile or recognise people.
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’s mother remarried and Valeria has a baby sister called Uliana.
Valeria was born in the Belarusian town of Slutsk. She was a healthy baby weighing in at 3.2 kg and for the first couple of years grew and developed normally. When she was 2, Valeria 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.