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.
Only at three and a half months did she start losing the strength to hold her head up and to keep both eyes looking in the same direction. Ksenia was diagnosed with spinal muscular atrophy (Goffman’s disease). It is a progressive condition and Ksenia will probably not live for more than two years.
In summer 2011, Friends of BCH received an SOS from BCH: 'We have a baby who will soon need a pulmonary ventilator and if she is lucky, she will reach the top of the queue for an intensive care bed in the hospital before it is too late. But she will have to spend the rest of her life in hospital. Please help us to get a portable ventilator so that her parents can continue to care for her at home.'
Market research showed that Nippy paediatric ventilators are the most highly recommended by children’s hospices in the UK. At the same time, Friends of BCH Chairwoman Daryl Ann Hardman met a generous donor from CCL Inverness who made available the funds to purchase two Nippy ventilators. A Rotary Club humanitarian convoy travelling from Cornwall to Belarus took the ventilators all the way to Minsk.
In October 2011, Daryl Ann visited Ksenia and her parents, Alexander and Natasha, at their flat in Minsk. Alexander and Natasha are grateful beyond words. Being on a ventilator at home means that Ksenia has the best quality of life possible. She gets constant love, care and stimulation from her mother who has given up work to be with her daughter. Three times a week Alexander babysits and Natasha spends the evening dancing with a local Latin American group. 'It’s my only outlet at the moment,' she says, 'I have told myself that Ksenia and I are facing this tragedy together and we will make it as good as we can for each other because we know that it will not be for long.'
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