Through no fault of her own, Deborah Klane’s world seems to be falling apart.

But she refuses to give up and says she’ll fight to the bitter end.

Klane, 47, got a letter from the state Friday the 13th, notifying her that her appeal for continued full-time home nursing care for her son, Evan, was denied.

Evan, who has cerebral palsy and profound special needs, has had nursing care 24 hours a day since birth through MaineCare.

But just before he turned 21 on Sept. 4 last year, the Klanes got a letter from the state saying he was no longer eligible for 24 hours of nursing care — that he now qualifies for only four hours a day.

Deborah Klane and her husband, Jonathan, appealed the decision, which was denied April 13. They have hired a lawyer from the Disabled Rights Center to contest the denial. The attorney has 15 days to do so and then a judge will make a final decision.

“He can’t do anything for himself,” Klane said Wednesday of her son, who was reclining in a special wheelchair, covered with blankets and attended to by Ellie Symonevich, 67, a licensed practical nurse who has worked with him for 19 years. “He needs constant, one-on-one care. He has severe, uncontrolled epilepsy and that puts him at risk for SUDEP, or sudden unexplained death in epilepsy.”

While the case was in the appeal process, Deborah explained, Evan was allowed to have the nurses, but if a final decision is made to cut him off, they will come for only four hours a day.

That leaves 20 hours of nursing care to Deborah, who already is exhausted from stress about the situation and worried something will happen to her son. She says she is not medically trained to handle his frequent seizures and detect when he is having serious medical issues.

“Evan can do nothing,” she said. “He can’t even tell me, ‘I’m in trouble. I’m sick. I can’t breathe. I need to be suctioned.’ I can listen for his breathing, but I can’t tell a doctor exactly what I’m hearing, like the nurses can.”

Ellie says some days Evan must be suctioned through his trachea 50 to 100 times. She moves around him like clockwork in the special addition the Klanes built onto their Fairfield house in 2001 to accommodate all his special equipment.

Ellie soothes him when he has a seizure, and makes sure he is OK. Evan, she says lovingly, introduced her to the world of books featuring the character Harry Potter.

“He teaches, he inspires and he opens up the world for people — old people like me,” she says.

She says she worries about Deborah, who takes care of Evan three days a week — and more, if nurses call in sick.

One week in February, for instance, Deborah did two, 24-hour shifts and a day shift. Ellie recalled that when she came in on Tuesday, Deborah was white as a sheet and very lethargic. Deborah also won’t soon forget that week, during which her husband was away working.

“When Evan was lying on his bed, I was lying on his table,” she recalled.

As if things could not get worse, the Klanes’ successful 14-year health and safety consulting and training company went into decline late last year when the effects of a rotten economy finally hit and business tanked.

“We had to take money out of savings to survive this past winter,” Deborah said.

Meanwhile, Jonathan, 51, a certified industrial hygienist, had to go elsewhere to find work. He left last weekend for Arizona, where he is now health and safety director for Arizona State University’s College of Engineering.

“He’ll come home when he can,” Deborah said.

The Klanes’ other son, Ian, 17, helps as much as he can, but is about to graduate from high school and go away to college.

Looking weary, Deborah said Evan’s nursing care costs about $23,000 a month — much more than the family could ever afford on its own.

The Klanes’ private insurance, for which they pay $1,200 a month, covers Evan’s hospital stays, lab work, doctors’ visits, diagnostic testing and medical equipment, she said.

If the family loses its case, Deborah will do 20 hours of nursing care a day in addition to her current responsibilities of managing his care, taking him to doctor’s appointments, getting his supplies and coordinating other activities.

While she already experiences nearly constant stomach pain from the stress and often sees a counselor, she says she is less worried about what will happen to her and more concerned for Evan’s welfare.

“I’m afraid for him, because when you are sleep deprived, you’re not thinking clearly and that’s when mistakes are made. I could give him the wrong meds or not enough meds or too many.”

Deborah will never put Evan in a home, will never give up on him, she said.

“He’s lived his life with such grace, courage and dignity. I have to fight; I have to honor that. Every single good thing in me is because of him. He’s such a good person.”

She says she used to be terribly shy and feared standing up for herself. Now, she is speaking, loudly, for her son.

“I found my voice because of him,” she said.

Amy Calder has been a Morning Sentinel reporter 24 years. Her column appears here Saturdays. She may be reached at [email protected]

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