Sonya’s Story: A culture that expects a disabled child to be raised in ‘care’

As soon as he was born, Sonya’s baby was taken from her. Diagnosed with spina bifida, he went to live in an institution 100 miles away from his home.

With access to good quality health and education, it’s hard for us to imagine being told you are not equipped to look after your own child. Here, disabled children with complex disabilities tend to live at home with their families. Parents provide their care regardless of whether they are tube fed or need regular medication. But, in many countries, parents of disabled children are told they cannot provide the care that their child needs.

Sonya instinctively knew her son would be better off with her. But, where the culture expects a disabled child to be raised in ‘care’, it’s difficult for parents to speak up.

Lumos worked with Sonya to bring her baby home. We provided her with support before he came home and we continue to support Sonya and her son now that he is living with his mother where he belongs.

“My dream is for him to walk and I will do my best for this to happen.”