The Enquirer and United Way of Greater Cincinnati have joined forces for the 35th year to help families in need with the Wish List program. This is the first of eight stories that will run this holiday season.
She sits in a wheelchair, a pink bow in her hair and sparkles on her jeans. The child is nonverbal, the result of a brain injury at birth. But she is observant and aware, and she expresses herself with the help of an eye-controlled speech-generating device.
“My name is Mariyah,” an electronic voice says. Seeing a visitor react to the greeting, she widens her eyes and flashes a broad smile. “I am 11 years old,” the voice says.
Those 11 years have been challenging for Mariyah and her 49-year-old mother, Brandi Norman, who live in a rental home in Green Township. Mariyah was born via an emergency C-section when a massive hematoma in her mother ruptured the placenta, restricting blood flow and oxygen to the infant’s brain.
Mariyah has never crawled. Never walked. She can’t stand without special equipment. She is prone to seizures, and she has been diagnosed with a long list of maladies, including hypoxic-ischemic encephalopathy, cerebral palsy, epilepsy and cortical vision impairment. She has had surgeries on her hips, her legs, a knee, an arm.
“Mommy’s going to give you your medicine, OK?” Brandi says. In their living room, she injects a pink solution – one of about four dozen medications Mariyah takes daily –into the girl’s G-J tube, which leads to her stomach and small intestine. “This is how she eats, as well,” Brandi says.
Brandi worked for many years as a hospice nurse’s aide. Now her job is taking care of Mariyah: feeding her, suctioning her, changing diapers, checking vital signs, and so on. “I love it,” she says, “but it’s a lot of work.”
To help make ends meet, Brandi sometimes visits the food pantry operated by Churches Active in Northside, the agency that nominated Mariyah for Wish List. On one such visit, about two years ago, pantry staff asked why Brandi was tearful, expecting to hear that her daughter had endured a setback or needed another surgery. Instead, they learned she was overwhelmed with gratitude that Mariyah had begun swim therapy at Cincinnati Children’s Hospital Medical Center.
Because of her compromised immune system, Mariyah has not been able to go to swim therapy during the pandemic. Nor can she go to her school, Struble Elementary, or do other things she once enjoyed, such as visit the zoo or attend special-needs camps.
Despite her many challenges, Mariyah retains a sweet disposition. Her smiles come easily. “She loves life,” her mother says.
Her life would be a bit brighter with a custom-built adapted tricycle. It would help strengthen her core and her legs, as well as improve her coordination, her mother says. And there would be another benefit for the girl who spends much of her life sitting or lying down.
“We sit on the porch,” Brandi says, “and she’s in her chair, watching the kids ride their bikes. She’ll look at me, and then look at them. I’m like, ‘I know, you want to ride and be there with the kids.’ And she always shakes her head, yeah, yeah, yeah.”
Because she just wants a chance to be a kid.
MARIYAH’S WISH: A custom-built adapted tricycle.
ESTIMATED COST: $5,000
If you can help in any way, please send checks directly to the United Way of Greater Cincinnati, Attn: Wishlist, P.O. Box 632711, Cincinnati, OH 45263-2711.
John Johnston is the content writer at United Way and a former Enquirer reporter.
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