Jessica was born with Niemann-Pick Type C, a little known cholesterol storage and metabolism disease. Three years ago, a severe seizure affected her ability breathe, eat, walk -- much less stand.
She relies on healthcare professionals like Alisha Davison to clear her airways, give her medication and provide physical therapy. Due to the budget crisis, the state agency that pays Jessica's caregivers is out of funds.
"This is the first time we've ever been pushed to the point where we have to say we can't pay you," said Mary Rollins from Westside Regional Center.
This is the first week of working without pay for caregivers like Alisha. She's committed to caring for patients like Jessica, but she's not sure how long she can go on.
"I have a child of my own that I have to provide for. It has a direct effect on me as well as it does on Jessica," said Alisha.
With no money coming in, Jessica's parents say caregivers are basically working on a handshake and trust.
"That trust doesn't pay their bills and it's caused some anxiety on everybody's part," said Jessica's father, Anthony Leoni.
State funded healthcare agencies are all feeling the effects of the longest budget impasse in recorded California history. While some legislators have expressed sympathy for families in Jessica's predicament, they say the budget crisis is beyond their individual control.
The Leoni's want lawmakers to know that no political stakes are ever worth jeopardizing the care their daughter depends on.
"Jessica needs this kind of help and if she doesn't get it, her day to day life will become more difficult than it is already," said Anthony Leoni.
As you may have heard, Tuesday Governor Schwarnegger vetoed the budget. We understand Democrats are considering a veto override. So the anxiety and the waiting will continue for Jessica's family and her caregivers.