Letting kids with sick parents be kids

By JO CIAVAGLIA
Bucks County Courier Times

Like many kids her age, Isabel Oppenheimer takes horseback riding lessons and tae kwon do. Unlike most kids in her situation, her parents can afford it. Shelbie and Jeff Oppenheimer say they’re lucky. Many families like theirs, with a parent who has amyotrophic lateral sclerosis, can’t afford extras — including extracurricular activities for children.

The Solebury couple and a caregiver are determined to change that.

Shelbie, 40, has advanced ALS, better known as Lou Gehrig’s disease, a fatal, slowprogressing neurodegenerative disease that paralyzes the body.

For the last year, Shelbie has been mostly bedridden. She requires a ventilator and a feeding tube. She depends on almost round-theclock medical care and expensive equipment, which can create a financial hardship even with insurance coverage.

In Bucks and Montgomery counties, at least 125 people have ALS and about 30 of them have young or school-age children, said Brenda Edelman, director of patient services for the Philadelphia Area ALS Association.

As the disease progresses, medical bills increase significantly and families are often forced to sacrifice things like extracurricular activities so they can afford necessary and expensive health care, Edelman and other advocates said.

Enter Shelbie.org, the nonprofit foundation the Oppenheimers and Kristin Cramer started to pay for the extracurricular activities of children whose parents have ALS. The first fundraiser, the Shelbie.org Festival, is scheduled for Saturday at the Warminster Community Park.

“It’s a hard enough thing for them to go through, to not have a mom or dad who can be there 100 percent, like they want to be,” said Cramer, one of Shelbie’s caregivers. “It’s like a big sister, big brother type thing. The kids can benefit and keep up with everything.”

Providing children with creative outlets is as vital to the well-being of a parent with ALS as any medicine, the Oppenheimers believe.

Shelbie has always been a child advocate. Before she had to quit her job, she worked as a preschool administrator. “Kids have always lit up when they were around her,” Jeff said.

A few years after Shelbie was diagnosed at age 28 with ALS, she and Jeff adopted Isabel, now 9, from Guatemala. The couple has made it a priority for their daughter to participate in extracurricular activities. And they’ve managed to do it on Jeff ’s income as a client services manager for a direct marketing company.

Sports and other hobbies can add up to a lot of money that families with large medical bills can’t afford, Edelman said.

Restricting kids’ activities can create a lot of parental guilt, Jeff Oppenheimer said, noting that keeping kids active is particularly important when a parent faces serious health limitations.

Isabel’s outside activities are also a way she and Shelbie can keep a deep mother-daughter bond. The first thing Isabel does when she gets home is tell Shelbie what happened at practice.

“She can live a life that is a lot like her friends,” Jeff said of their daughter.

Karen and Bill Bishop hope they’re never forced to consider cutting back on their kids’ activities.

Bill, 45, was diagnosed with ALS in 2002. The Northampton couple has two children, Stephen, 14, and Elaine, 11, who participate in outdoor sports.

His disease has also progressed slowly. Bill cannot move his arm and recently lost his ability to speak, but he works at home using a special computer that operates with eye movement. The family owns a benefit consulting business established long before Bill’s diagnosis, and the nature of the work has allowed Bill to continue.

For the Bishops, the difficulty of two active kids isn’t financial, but logistical.

Bill can’t be left alone, and caregiver coverage gaps — particularly on weekends — means Karen has to rely on her kids’ teammates or friends to shuttle them to practices and games.

“We’re trying to make sure we don’t have to curtail activities for the kids,” she added. “It’s so important they feel like other kids, like they belong.”

http://www.phillyburbs.com/pb-dyn/ne...7-1418127.html