"We hope because we have to live with hope"

Seven year old Liza lives with her mother Enna, her father Sergei, and two younger brothers in a small apartment in Minsk, Belarus.  They are part of Chernobyl Children International’s Community Care Programme. The programme gives the families of seriously ill and disabled children the support they need to care for them at home, rather than put them in an institution.
 
Liza has a cerebral herniation — a type of hydrocephalus — a cleft lip and palate, glaucoma in both eyes, and suffers frequent seizures. 
 
The doctors say she has ‘no brains’ and refuse to do anything to help her.  She needs to be fed through a tube and because of her seizures, the doctors are afraid to do further operations.  
 
“They insisted on keeping her in an institution, where they neglected her. When I complained, they stopped me from visiting her."  Enna told us.

"Now, thanks to Chernobyl Children Internatonal, we can keep her with us at home." 
 
“CCI sends us a physical therapist, that has really made a huge difference for Liza.  It is strengthening her legs, and with sensory work, she is leaking less from the mouth and starting to make some sounds.
This helps her to relax while we feed her and reduces her discomfort. She has seizures less frequently, we’ve even been able to take her off the anti seizure medication.  

“Maybe it’s too much to hope for — but I dream of her walking.  We hope because we have to live with hope.  She’s already suffered two clinical deaths.  But we believe in goodness, and that good things will come to our family if we only keep up hope." 

Liza is living proof that loving care from a family is the most vital support a child can receive.  It is so important that children like Liza are provided this palliative support to keep them out of bleak institutions and surrounded by love. 

To support Liza and children living with life-limited conditions in Chernobyl's dark shadow, please click here. 

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