The Lived Experiences of the Mother of a Child with Werdnig-Hoffman Syndrome: A Qualitative Case Study

Werdnig-Hoffman syndrome is a progressive neurodegenerative disease and an autosomal recessive disorder. This was a qualitative case study focusing on lived experiences of the mother of 2 children with Werdnig-Hoffman syndrome.
Case Report: The case was a 37-year-old widowed, mother of two children with Werdnig-Hoffman syndrome. The first child had died at age 5 due to breathing and swallowing issues and the second child is now 2 years old and has tracheostomy. The mother's experiences of living with children with Werdnig-Hoffman syndrome were “the disintegration of family life, observing the slow death of a children, understanding the children’s feelings, and caring for an ill child”.
The results of the present study suggest that the mother had experienced distress due to the disintegration of life, and observing the death of a child, and caring for a sick child. Financial problems, substance abuse, and the death of the spouse were due to the crippling costs and issues of the disease.