Chernobyl Children International supports families with children who suffer from life-limiting illnesses and disabilities to deliver therapeutic and personal services in the loving care of their family homes through our Community Hospice Programme. This invaluable Programme makes our work all the more rewarding and reminds us that ‘Hospice is not about Death but about Life.’ Achieving the best possible quality of life for a child in his or her last months of life is a tremendous achievement of CCI’s Hospice Programme.
Each family on the Programme is assigned a palliative care team comprised of a doctor, nurse, social worker and psychologist. The team makes home visits to supervise the child’s care, provides medication and supplies at no cost and evaluates the social and emotional needs of all family members. Multi-disciplinary teams also provide physiotherapy and therapeutic massage to ensure that the children are in as little pain as possible. Four year old Sasha and eleven year old Valera are just two young children who have benefitted from the service this Programme provides to the community.
Sasha was born with a rare form of spinal atrophy. This disease is especially hard to endure as it affects the body, but not the brain. Little Sasha has no mental disability but sadly, is trapped in her body. Her prognosis is extremely poor. Just 95% of stricken children will not live to see 2 years old. Sasha is one of the lucky ones who got to celebrate four birthdays. She can’t move or speak, but she is fully alert and very bright. She communicates with her mother through blinking.
Sasha is an extraordinary girl, but tragically, she is an example of Chernobyl Lineage which is the passing the effects of Chernobyl from generation to generation. She is what we call the ‘Granddaughter of Chernobyl’ because both of her parents were also children deeply affected by Chernobyl. Her Mama, Lena’s own health isn’t great and she has had to have her Thyroid gland removed as it was cancerous. Since the operation, she continues to suffer from further cancers. Health problems coupled with a lack of income from providing full-time care for her daughter means that Lena finds the days difficult. She is glad of the support and camaraderie that she receives on CCI’s Hospice and Community Care Programme – especially in recent times where Covid-19 has swept the globe leaving many vulnerable people stranded and isolated. Connecting with people in Lena’s position makes our work all the more fulfilling.
Beautiful Valera is another of Chernobyl’s unwilling victims. She is only 11 years old but already her life is extremely difficult. She has cerebral palsy, scoliosis and an extremely painful inguinal hernia. She lives in a small house with a large family and her living conditions are extremely poor. Valera’s Grandmother is Valera’s main carer but given her age and the struggle of recent times, she is finding it very difficult to cope. The family are struggling to afford Valera’s medication and her condition has deteriorated rapidly in recent months. A recent visit from Chernobyl Children International’s frontline worker Yulia helped to alleviate the family’s distress and offered hope and a helping hand at a time which has been incredibly difficult for so many people around the world. This is what CCI’s Hospice and Community Care Programme is all about… ‘offering people hope to live.’
As part of the development of our Community Care Programme, CCI also upskills and trains local therapeutic professionals to design support plans for each family and complete a needs assessment for each child. Daily and weekly therapeutic and nursing visits, monitoring and social supports make it possible for these high-risk families to stay together as a unit.
CCI employs 16 healthcare professionals in this programme, all of whom have been delivering over and above to these families as the Coronavirus Crisis unfolds. We wish to acknowledge their formidable work at this difficult time and to thank them for their extraordinary effort.