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 and heart to stop beating for several seconds at a time. The most notable difference is that the amount of time she stops breathing has grown longer.
"She's pretty much been doing the same, so I was happy about that," said Kayla's mom Dawn. Last year, the family took Kayla to Disney because they didn't expect she would live that long.
"This is a disease that is hard to give a prognosis for," Dawn Murphy said. "Last year, they told us this might be our last chance to take her to Disney. I can't believe it's already been a year."
But things have taken a turn for the worse for Dawn Murphy, who was also recently diagnosed with mitochondrial disease. She 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. She has lost weight and keeps getting reoccuring respiratory infections. The infections make her weak.
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 and Dawn Murphy said he deals with it by turning the pain into laughter and jokes and keeping the mood around his family positive.
Dawn Murphy said the family is struggling financially because of all the medical bills. She used to work full-time but now has part-time job at home doing human resources.
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. Dawn's parents will also come to spend the holidays with the family.
Despite the family's health problems, Dawn Murphy said her daughter has seemed at peace lately.
"She has been very happy the last couple of months," Dawn Murphy said.