Hospice Program Cares & Prepares For Death Of An Ill Child

By Kathy Walsh

DENVER (CBS4) - There is hospice care for adults who are dying, but how do you help a child with a terminal illness? How do you ease the stress on the family?

The Butterfly Program in Denver is designed to do both. It is offered by Children's Hospital and Porter Hospice of Centura Health at Home. It provides care for a dying child and comfort for the family.

At his home in Aurora, little Avery Burtscher lights up with the sounds of a children's song. Singing is soothing for this special boy. Avery was born with Walker-Warburg syndrome, a severe form of muscular dystrophy. He can't sit up or eat on his own. And Avery is nearing the end of his life.

"With Walker-Warburg, most kids don't make it past 3, and he turned 3 May 28," said Tiffany Lawrence, Avery's mother.

So on a Monday, music therapist Ana Jacobsen played guitar and a steel drum for Avery. Jacobsen and her music are part of The Butterfly Program, hospice care for children.

"When you put somebody into hospice care you feel like you're giving up. They (The Butterfly Program) teach you that you're not giving up, you're preparing, " Lawrence told CBS4 Health Specialist Kathy Walsh.

The Butterfly Program offers care for the children and counseling for the family. Lawrence says social workers walked her through what to do and how she'll feel.

"And when it was said and done one of them looked at me and said, 'Tiff, you look free.' And I said, 'I am,'" said Lawrence.

Music therapy, twice a month, brings Avery and his mother joy.

"And to really just have some time where they can just celebrate being together," explained Jacobsen.

The focus isn't on losing Avery, but embracing the precious days left.

"We love him, we care for him, we give him everything we possibly can," said Lawrence, choking back tears.

Lawrence knows her little boy's life is out of her hands. She is dedicated to working with The Butterfly Program to make Avery's final days the happiest possible.

To learn more about the Butterfly Program go to centurahealthathome.org/CHH/Our-Specialties/The-Butterfly-Program or call 303-561-5000.

Kathy Walsh is CBS4's Weekend Anchor and Health Specialist. She has been with CBS4 for more than 30 years. She is always open to story ideas. Follow Kathy on Twitter @WalshCBS4.