She was not expected to reach her first birthday. But tremendous medical care at St. Christopher's Hospital for Children, coupled with her parents' love and commitment, have extended her life, one miraculous year at a time.
And so there she sits, strapped into her heavily padded wheelchair in the Korsens' kitchen, where Howard feeds her dinner. Mara's head jerks around, and sometimes food dribbles down her chin. When she gets agitated, Howard clicks through an iPod shuffle and plays "The Nearness of You," sung by Ella Fitzgerald.
Mara instantly calms as the Queen of Jazz begins: "It's not the pale moon that excites me ... "
"Mara loves Ella," Howard says. "The shuffle has 210 Ella songs. The ones with Louis Armstrong are her favorites. My kid has great musical taste."
Ann, who works in sales, is away on business. So Howard, who works for a transit agency (he prefers I not identify it here), is handling tonight's meal on his own. Later, he will handle Mara's bath solo, too.
This where he and Ann need help, to help Mara.
Mara weighs 70 pounds, a considerable weight to be lifted out of her wheelchair, lowered into a tub and then hauled back out.
Years of bending and lifting have herniated discs in Howard's neck, sending him into spasms. Ann, 57, also has bad discs and no longer can lift her daughter.
So, the Korsens have three choices.
The first is to stop bathing Mara, opting for a sponge job in her wheelchair. This is unacceptable, as Mara has finally begun to mature and needs a real bath.
The second is to continue as usual, worsening Howard's neck.
The preferred third is to install a bathing device that will allow Mara to be bathed in a way that won't cripple her parents.
The chair that Mara's doctor has ordered would allow the Korsens to slide Mara onto a bath seat from her wheelchair, raise and pivot the seat over the tub and then lower it into the water. It would recline and include safety belts, because Mara's seizures could crack her skull against the tub.
The chair's price tag is $3,496. But the Korsens' insurance provider, UnitedHealthcare, has denied the claim, because bath chairs are excluded from their policy.
Even though Mara's condition obviously requires such equipment if she is to be clean. Which looks like a medical necessity to anyone with any sense.
The Korsens have been here before. They fought for six months with their former insurer to pay for a $700 toilet chair, which eventually was approved on appeal.
"UnitedHealthcare is very sympathetic to the health challenges faced by Mr. Korsen and the demands placed on him as the caregiver for a child with complex health-care needs," says company spokeswoman Mary McElrath-Jones. "Unfortunately, Mr. Korsen's benefits plan does not cover the type of bath chair requested. However, Mr. Korsen has the right to appeal this decision."
Hmmm. The Korsens' plan also doesn't cover a specific nutritional supplement that Mara needs. Yet, UnitedHealthcare decided, up front, to cover its cost without making the Korsens jump through the appeals hoops. Why not just skip that process, given how well the insurance company knows Mara's needs by now?
"It's exhausting," Howard says. "I'm sure many people give up after the first denial."
His words are familiar to Emilio Pacheco, program director of Vision for Equality, which advocates for the disabled and their families. When it comes to equipment like Mara's bath chair, he says, many insurers will decline its cost, even when the equipment unquestionably is needed.
"We've seen insurers deny a claim because it included just one wrong word," says Pacheco.
Mincing words may save an insurer some money. But it won't help devoted parents care for their child in their own home.
"This chair isn't an extravagance," says Howard. "Other people institutionalize their kids. We're not judging them. But Mara is our flesh and blood, and we want to take care of her for as long as we can."
They just need a little help.
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