The Enquirer and United Way of Greater Cincinnati have joined forces for the 34th year to help families in need with the Wish List program. This is the seventh of eight stories that will run this month.
Lisa Helphenstine retrieves her daughter’s medications and places them on a table in their South Lebanon home. Several dozen bottles, boxes and dispensers contain the pills that Emma, 15, takes daily. Fifteen in the morning; one in the afternoon; 10 more at night.
Among them is a new medication that must be injected. Lisa says she’ll watch a video to learn how to do it.
“Can you practice on the dog?” Emma jokes, referring to her pug Penelope, a registered support dog that was a Christmas gift three years ago.
The many medications reflect Emma’s struggles with a variety of health issues.
She was born without the valve that controls blood flow from the heart to the lungs, and as a result, she received a heart transplant when she was one month old.
At age 10, she developed a serious complication from anti-rejection medicine. “Once she got (that),” her mother says, “everything else started to happen, all the bad things.”
They include chronic lung inflammation; frequent bouts with pneumonia; chronic kidney disease; an immune system disorder; osteoporosis and fractures in her back; chronic low-back pain; arthritis; joints with an unusually large range of movement; water on the knee, which sometimes causes her knees to swell to the size of footballs; muscle weakness; and severe eczema that makes her entire body hurt.
“We see a ton of specialists just to make her feel OK,” her mother says. Some days, Emma does feel relatively good.
“But there are days that feel like the worst day in the world,” Emma says. That’s when climbing a flight of stairs or even getting in or out of a car can be exhausting.
Pain has caused Emma to miss many days of school over the years. Despite that, officials at Kings High School, where Emma is a 10th grader, have made accommodations so that she can earn the credits needed to graduate with her class. She attends classes from 7 a.m. to noon each day. She does not have to climb stairs. Several classes are in the same room, and others are just a few steps away.
Lisa and Scott Helphenstine have three other children, including a son with autism. They want Emma to have as normal a life as possible, and to enjoy outings to parks, the zoo, or shopping. But those involve walking, as do appointments with specialists. When she overexerts herself, “It takes a day or two for her to recover,” her mother says. “She’ll come home, go straight to bed, and sleep most of the next day.”
Since April 2019, Emma has seen specialists at Cincinnati Children’s Hospital Medical Center’s Aaron W. Perlman Center, which provides therapy and support to children who have physical disabilities. Therapists there assessed Emma’s mobility and determined that she needs a customized manual wheelchair. The cost: $8,104.
The request was submitted to the Helphenstines’ private insurance company, which said it would approve payment of $3,993 – the cost of the wheelchair frame. But without other chair components, including the seat, cushion, handles and head rest, the chair is unusable.
Three appeals were filed. All were denied. Then an external third-party review board weighed in, explaining Emma’s medical condition and need for the chair, to no avail.
Emma’s mother says she and her husband have trucking industry jobs that have been adversely affected due to COVID-19. What’s more, they spend thousands of out-of-pocket dollars on medications and treatments not covered by insurance. “There’s no way” for them to pay the $4,171 needed to completely equip the wheelchair, Lisa says.
How much of a difference would the wheelchair make for Emma?
“It would be life-changing for her,” her mother says.
EMMA'S WISH: A custom manual wheelchair.
ESTIMATED COST: $4,171.
How to help
Donations can be made online at www.uwgc.org/wishlist. You can also mail donations to: The Wish List, P.O. Box 6207, Cincinnati, OH 45206.
John Johnston is the content writer at United Way and a former Enquirer reporter.