LEXINGTON/DANVILLE, KY. (LEX18) — A Danville family is facing an overwhelming challenge as their 19-month-old daughter battles a rare form of cancer while they struggle to keep up with the financial demands of her life-saving treatment.
Nineteen-month-old Mariah Way is a bubbly, happy, and talkative toddler who has been fighting for her life since birth.
When Mariah was born, doctors immediately recognized something was wrong. Her mother, Deborah Way, learned her daughter had CLOACA, a rare genetic disorder where the digestive and reproductive tracts are fused together. This condition requires Mariah to eat through a feeding tube and use a colostomy bag.
"Whenever she was born, they instantly realized she had something weird going on, and they came back and told me it was a CLOACA anomaly," Way said.
At just 2 days old, Mariah underwent her first surgery. A month later, she received another devastating diagnosis: Retinoblastoma associated with the RB-1 gene mutation. Way says about 1 in 20,000 children are diagnosed.
"I couldn't believe it," Way said, becoming emotional. "Nobody imagines they're going to be a parent with a kid with cancer, so you always think, 'oh, that won't be me,' and you hope it's not."
The road to recovery has been filled with challenges and setbacks. In January, the family nearly lost Mariah when she became critically ill.
"January 25 of this year, she got very sick, and we almost lost her. That was hard. They decided to stop chemo because her body couldn't handle it," Way said.
Since July, Mariah has required kidney dialysis treatment 3 days a week at Cincinnati Children's Hospital. This demanding schedule requires Way to make a 6-hour round trip from their home multiple times per week.
"I drive 3 hours to Cincinnati, and then it's 3 hours of treatment, and then 3 hours back home," Way explained.
In total, Way drives 786 miles each week. The extensive travel has created financial strain through mileage, car maintenance, and gas costs. The family is now searching for a new van and a special car seat that can accommodate Mariah.
"And it's about the size of 2 car seats. So you have a little sedan basically, and it will have to be behind the passenger seat. Passenger seat all the way forward, leaned all the way forward, and it takes up both back seats," Way said.
Despite the overwhelming challenges, Mariah's strength continues to inspire her mother and everyone around her. Way says that life expectancy after a year is very rare, but Mariah is holding on strong.
"Your disabilities don't define you. Your medical issues don't define you. You can still be loved and live a great life and still be happy," Way said. "You have to look at the bright side. Just day by day. I think taking it day by day is really the best process. That's all you can do. You just love that baby and hold them tight."
"With her cancer, where it's genetic, she can never go into remission, and I think that's probably the scariest thing," Way said. She explains that to remove the optical tumors, Mariah would need her eyes removed.
The Way family has established a GoFundMe to help with medical expenses, lodging for winter, and transportation costs as they continue Mariah's treatment journey.
You can also follow along with Mariah's journey on Facebook: Team Mariah.
