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.
We were privileged to accompany hospice nurse Vera on her regular visit to the family to assess Viktor’s heart, lungs and general development. This was one of the early ambitions of BCH, to provide a hospice at home and to maintain as normal a life as possible for severely disabled children with their families. Vera explained that Viktor had been on breathing support for many months and she had supervised his transition from hospital to home and hospice care. Most importantly, the continuity of understanding, support and advice that she and the hospice team could offer had enabled Yuliya to cope with her own medical and psychological challenges and aid Dmitry’s acceptance of his disabled brother. Yuliya is an amazing young woman, courageous, loving and full of fun and to see her cradling Viktor to give comfort and, as taught by Vera, to stimulate movement in his limbs was very moving.
Dmitry also likes to exercise, even in a one room, seventh floor flat on the outer edge of Minsk, by boxing. Vera is now teaching Dmitry how to exercise his little brother’s body by rolling Viktor gently over his boxing cylinder on the floor to stimulate whole body movement. The therapy was devised by Vera and Katerina, the BCH physiotherapist, to engage Dmitry and utilise shared family resources. This illustrates a new venture for the hospice and a focus for future Friends of BCH fundraising, the development of a children’s physiotherapy service that will devise and disseminate home based therapies to make the best of all the children’s talents and abilities whatever their difficulties.
A few days after our home visit, we found Dmitry engrossed in the activities at BCH’s countryside summer camp at Zabrodie with other like-minded well brothers and sisters of sick hospice children. He was enthusiastically singing in the concert, blowing bubbles and playing football. The course of Yuliya’s life is uncertain and one day Dmitry may become his brother’s carer but for now he is just an eleven year old would-be mathematician and experienced physiotherapist.