'These kids need us to stand up for them'

Summary

Facing $60 million in cuts, Children's Hospital staff members, along with patients' parents, have launched a week-long intense lobbying campaign to keep critical home care programs alive. "I feel like my life would end," said Lisa Hilberg, whose daughter requires constant care.

Story Published: Apr 9, 2009 at 5:14 PM PST

Story Updated: Apr 10, 2009 at 9:08 AM PST

'These kids need us to stand up for them'

Payton Hilberg (center) with her mother Lisa in the background.

SEATTLE -- Faced with $60 million in budget cuts, Children's Hospital staff and the parents of the young patients have launched a week-long intense lobbying campaign aimed at preventing the loss of many critical programs, including home care nursing.

One of those who could be affected by the cuts is little Payton Hilberg, one of only 10 children in the world diagnosed with diaphragmatic agenesis. That means her diaphragm is undeveloped.

Unable to eat or breathe on her own, she needs constant care from her mom and regular home nursing aid.

"We've always pushed Payton," said her mom, Lisa Hilberg. "We weren't willing to just let her lay down in a bed and just sit there all day."

With constant home care, Payton is doing things doctors said she'd never do. She's off the ventilator for short periods and can play with friends.

But the looming state budget ax could fall on the home care program -- a possible casualty of the $60 million in proposed hospital cuts. The loss could tear families apart and force Payton and 1,700 other sick children back in the hospital.

"I feel like my life would end," Lisa Hilberg said. "She's very special."

Suzanne Peterson, the vice president of Children's government affairs, says the level of cuts are truly devastating "at a time when we are already seeing a reduction in donations due to the overall economy."

To ward off the cuts, Peterson's office at Children's is coordinating passionate pleas in an intense week of lobbying by parents, friends and staffers who believe in the progress of their patients.

"These kids need us to stand up for them because if we don't, nobody else is going to do that," said Cheryl Wable, a home care nurse.

Hilberg added: "You know, we're bailing out all these companies nationally. I want to know why we're not bailing out our children?"

Children's is urging the public to now get involved by calling and e-mailing their legislators. You can find them by clicking here.