Update: Young Kayla Murphy still in hospice, mother joins her
Young Kayla Murphy suffers from a debilitating cell disease that her family knows will one day take her life.
I first wrote about 6-year-old Kayla, who suffers from mitochondrial disease, in August as part of a story about a shortage in hospice care for children. The story received numerous responses from readers wanting to know how Kayla is doing.
Kayla is still in a home-based children’s hospice at Gilchrist Kids and her condition hasn’t changed much since the summer, said her hospice social worker Betsy Schindler. The disease causes Kayla to stop breathing for several seconds at a time. The most notable difference is that the amount of time she stops breathing has grown longer.
But now Kayla’s mom, Dawn, who was also recently diagnosed with mitochondrial disease, is also in Hospice in Gilchrist’s adult program as some of her symptoms have started to worsen in recent weeks. Dawn, 36, has had several digestive issues that make it hard for her to eat, among other ailments. Her cognitive ability has slowed as well, Schindler said.
Schindler said it is unusual to treat a mother and daughter at the same time. While it is hard for dad and husband Stephen to cope, Schindler said he deals with it by turning the pain into laughter and jokes and keeping the mood around his family positive.
Gilchrist wants the Murphy family to have a good holiday and will bring gifts for them later this week as part of its adopt-a-family program.
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