Lexington, Kentucky, December 16, 2025
A Lexington family is urgently seeking community support for their 19-month-old daughter, Mariah, who battles multiple life-threatening health conditions. Born with a rare genetic disorder, CLOACA, and diagnosed with retinoblastoma, a rare eye cancer, Mariah requires extensive medical care including kidney dialysis and chemotherapy. The family’s search for assistance has led them to establish a GoFundMe campaign to cover medical expenses and transportation. Despite the challenges, Mariah’s resilience continues to inspire her family and community, who are rallying to support her journey.
Lexington, Kentucky
Family Seeks Community Support for 19-Month-Old Mariah’s Life-Threatening Health Battles
A Lexington family is urgently seeking community assistance as their 19-month-old daughter, Mariah, confronts multiple life-threatening health conditions. Born with a rare genetic disorder known as CLOACA, which causes the digestive and reproductive tracts to fuse, Mariah requires a feeding tube and colostomy bag for daily sustenance. At just two days old, she underwent her first surgery, and a month later, she was diagnosed with retinoblastoma, a rare eye cancer associated with the RB-1 gene mutation. This condition affects approximately one in 20,000 children. In January, Mariah’s health deteriorated significantly, leading doctors to pause her chemotherapy due to her body’s inability to tolerate the treatment. Since July, she has been undergoing kidney dialysis three times a week at Cincinnati Children’s Hospital, necessitating a six-hour round trip from their home multiple times per week. This demanding schedule has imposed substantial financial strain on the family, covering mileage, car maintenance, and fuel costs. To accommodate Mariah’s medical needs, they are searching for a new van and a special car seat, as her current vehicle is inadequate for her equipment. Despite these challenges, Mariah’s resilience continues to inspire her family and community. The Way family has established a GoFundMe campaign to help with medical expenses, lodging, and transportation costs as they continue Mariah’s treatment journey. You can also follow along with Mariah’s journey on Facebook: Team Mariah.
Background on Mariah’s Health Conditions
Mariah’s journey began with the diagnosis of CLOACA, a rare congenital anomaly where the digestive and reproductive systems are fused, leading to the need for a feeding tube and colostomy bag. Shortly after, she was diagnosed with retinoblastoma, a rare eye cancer associated with the RB-1 gene mutation, affecting approximately one in 20,000 children. In January, Mariah’s health worsened, prompting doctors to pause her chemotherapy due to her body’s inability to tolerate the treatment. Since July, she has been undergoing kidney dialysis three times a week at Cincinnati Children’s Hospital, requiring a six-hour round trip from their home multiple times per week. This demanding schedule has imposed substantial financial strain on the family, covering mileage, car maintenance, and fuel costs. To accommodate Mariah’s medical needs, they are searching for a new van and a special car seat, as her current vehicle is inadequate for her equipment. Despite these challenges, Mariah’s resilience continues to inspire her family and community. The Way family has established a GoFundMe campaign to help with medical expenses, lodging, and transportation costs as they continue Mariah’s treatment journey. You can also follow along with Mariah’s journey on Facebook: Team Mariah.
Community Support and Resources
Families facing similar challenges often find support through community resources and organizations dedicated to assisting those with medically fragile children. For instance, the Georgia-based Fragile Kids Foundation reports that there are about 13,000 medically fragile children in Georgia, and the Georgia Pediatric Program (GAPP) provides services to these children, including nursing and personal care support services at homes and communities. Additionally, organizations like Life House Atlanta aim to provide respite care for families, offering a much-needed break for caregivers. While Life House Atlanta is working towards opening a physical care home, they currently focus on building awareness and creating a support community for affected parents. These resources can be invaluable for families navigating the complexities of caring for a child with serious health conditions.
Conclusion
The Way family’s experience underscores the profound challenges faced by families with medically fragile children. Community support, both emotional and financial, plays a crucial role in helping these families manage the demands of caregiving. By raising awareness and contributing to support initiatives, communities can make a significant difference in the lives of families like the Ways, providing hope and assistance during their most trying times.
FAQ
What is CLOACA, the condition Mariah was born with?
CLOACA is a rare congenital anomaly where the digestive and reproductive systems are fused, leading to the need for a feeding tube and colostomy bag.
What is retinoblastoma, the eye cancer Mariah was diagnosed with?
Retinoblastoma is a rare eye cancer associated with the RB-1 gene mutation, affecting approximately one in 20,000 children.
How can I support the Way family during this challenging time?
The Way family has established a GoFundMe campaign to help with medical expenses, lodging, and transportation costs as they continue Mariah’s treatment journey. You can also follow along with Mariah’s journey on Facebook: Team Mariah.
What resources are available for families with medically fragile children?
Organizations like the Georgia-based Fragile Kids Foundation and Life House Atlanta provide support and resources for families with medically fragile children, including respite care and community support.
How can community support make a difference for families like the Way family?
Community support, both emotional and financial, plays a crucial role in helping families manage the demands of caregiving, providing hope and assistance during their most trying times.
Key Features
| Feature | Description |
|---|---|
| Mariah’s Health Conditions | Born with CLOACA, requiring a feeding tube and colostomy bag; diagnosed with retinoblastoma, a rare eye cancer. |
| Treatment Challenges | Underwent chemotherapy paused due to health complications; currently receiving kidney dialysis three times a week at Cincinnati Children’s Hospital. |
| Financial Strain | Family faces significant expenses for medical treatments, travel, and accommodations related to Mariah’s care. |
| Community Support | Family has established a GoFundMe campaign and a Facebook page, Team Mariah, to garner support and raise awareness. |
| Available Resources | Organizations like the Georgia-based Fragile Kids Foundation and Life House Atlanta offer support and resources for families with medically fragile children. |
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