Mariah's profound medical journey, documenting her diagnoses, treatments, incredible resilience, and the critical needs of her supporting family.
I. Initial Discovery and Birth
The journey began during pregnancy when ultrasound suggested Mariah might be born with only one kidney. Doctors advised the family to prepare, knowing a full evaluation would be needed after birth. Everything else appeared normal, though she was noted to be on the small side. Mariah’s delivery, however, was challenging. Due to the mother experiencing heart complications and preeclampsia, Mariah had to be taken early via C-section, as the mother’s life was at risk. On April 8th, 2024 Mariah was born at UK Hospital. She was immediately transferred to Cincinnati Children's Hospital because the issues identified at birth required more specialized care than the UK facility was equipped to handle. Tragically, due to her C-section recovery and ongoing heart issues, Mariah's mother was unable to join her immediately in Cincinnati, which added immense stress to an already critical situation.
II. Complex Diagnoses and Immediate Intervention
Upon arrival at Cincinnati Children's Hospital, Mariah was given several critical diagnoses:
1. Fused Kidneys (Congenital Condition) Mariah was found to have abnormally small fused kidneys, a congenital condition where the kidneys fail to fully separate as they move into place. This dramatically increases her risk for future kidney injury and failure.
2. Cloacal Malformation She was also diagnosed with a cloacal anomaly malformation, a rare birth defect where the rectum, vagina, and urinary tract merge into one singular common channel instead of three separate ones. This requires complex surgeries for separation to achieve normal function and necessitates long-term care for urinary, bowel, and reproductive health. Immediate Life-Saving Procedures Mariah was rushed into surgery to create a channel for urine to exit her body and to install a colostomy bag to collect feces. As a direct result of her condition and the necessary immediate procedures, Mariah has been fed using a feeding tube her entire life.
III. The Battle with Cancer and Genetic Roadblocks
In the search for answers regarding her initial malformations, doctors performed genetic testing. Unfortunately, the results offered no syndrome name or guidance for the treatment plan, suggesting two random, unrelated problems. However, the testing delivered another unexpected and critical diagnosis:
3. RB1 Gene Mutation and Bilateral Retinoblastoma The genetic test revealed the presence of the RB1 gene mutation, the first identified tumor suppressor gene, which increases the risk of uncontrolled cell division and tumors. Shortly after, an 11mm tumor was found behind Mariah’s right eye, leading to the official diagnosis of retinoblastoma eye cancer. The cancer subsequently spread to the left eye, officially changing the diagnosis to Bilateral Retinoblastoma (cancer in both eyes). Mariah begins a grueling battle with chemotherapy. The chemo initially halted the growth of new tumors and stabilized the large tumor. However, Mariah became critically ill due to being auto-immune compromised. Chemo was paused while she recovered, only for her to become seriously sick again a few weeks later, this time with life-threatening septic blood. She nearly lost her battle, making it an emotionally devastating experience for the family.
Monitoring Plan and Cancer Effects
The difficult decision was made to stop chemotherapy altogether, as her body could no longer tolerate the treatments. Thankfully, the tumor remains stable. The current plan is intense, active monitoring, which includes monthly operating room visits requiring overnight stays and anesthesia to evaluate the tumor and search for any new development.
IV. Additional Challenges and Current Treatment
Obstacles During this period, Mariah’s growth was naturally slow due to her health issues and the effects of chemotherapy. A new challenge emerged when her mother noticed range of motion issues in her leg.
4. Severe Hip Dysplasia Mariah was diagnosed with another separate, rare condition: Severe Hip Dysplasia. If not addressed quickly, this condition will prohibit her ability to crawl, stand, and walk in the future. The only corrective action is a major hip surgery requiring an immediate full leg cast, extending from the hip to the ankle, and holding the leg fully extended. This cast is expected to stay in place for 1 to 2 years. Depending on how the hip heals, additional surgeries and/or casting may be necessary in the future. Renal Failure and Dialysis The chemotherapy, while stabilizing the cancer, caused severe kidney injury, resulting in renal failure. To treat this life-threatening condition, Mariah now undergoes mandatory dialysis treatment three times a week (Monday, Wednesday, and Friday) until she can receive a kidney transplant. Missing a single treatment is a risk to her life.
Compounding Surgical Complications Mariah ultimately needs a kidney transplant, but she is currently too small. The plan is to begin growth therapy in April 2026 if all goes well. However, to even be deemed medically stable enough for the transplant wait list, her other rare conditions must be addressed. The hip dysplasia surgery is urgent, but the affected hip is on the same side as the colostomy bag. The hip surgery cannot proceed without reversing the colostomy bag, which itself cannot be removed until the complex surgeries needed to correct the cloacal malformation are performed. To complicate matters further, recent imaging showed that her internal organs are not in their normal anatomical positions but are in varying, tangled positions, making the necessary separation surgery extremely complex.
V. The Family's Immediate Needs Today, 19 months later, the family is at a critical juncture and needs a village of support. Cincinnati Children's Hospital is the only facility equipped to handle Mariah’s combination of rare, critical, and unrelated health issues. The hospital is 131 miles one way from their home in Danville, Kentucky. The mother cannot return to work due to the demands of Mariah's medical needs and raising Mariah's 4-year-old big sister, Alilah. The family drives approximately 800+ miles per week (3,200-3,500 miles per month) for mandated dialysis treatments and other critical appointments.
Critical Financial and Logistical Needs The family’s current vehicle, an older Acura, has broken down three times en route to or from Cincinnati, requiring over six thousand dollars in repairs. It is no longer a reliable form of life-saving transportation and must be replaced. This need is compounded by the following requirements:
1. New Reliable Transportation: They urgently need a new vehicle, preferably a minivan with captain seats or a mid-sized SUV with third-row seating. The vehicle must safely accommodate: - A specialized, medical-grade car seat designed for the two-year, full-leg cast (which requires space to hold the leg fully extended). - Alilah’s toddler car seat. - All of Mariah's medical supplies and equipment.
2. Creation of a Family Support Fund: A fund is needed to cover the continuous financial strain, including: - Gas for the 800+ weekly medical miles. - Car insurance and vehicle maintenance (like regular oil changes). - Medication co-pays, rent, utilities, and food (especially while traveling/during overnight stays).
3. Emergency Lodging Funds: Funds are needed for hotel stays during dangerous winter travel conditions (snow/ice). Insurance does not cover these costs, and the Ronald McDonald House does not accept dialysis patients for outpatient treatment or bad road conditions. Missing a dialysis treatment puts Mariah’s life in danger.
I. Initial Discovery and Birth
The journey began during pregnancy when ultrasound suggested Mariah might be born with only one kidney. Doctors advised the family to prepare, knowing a full evaluation would be needed after birth. Everything else appeared normal, though she was noted to be on the small side. Mariah’s delivery, however, was challenging. Due to the mother experiencing heart complications and preeclampsia, Mariah had to be taken early via C-section, as the mother’s life was at risk. On April 8th, 2024 Mariah was born at UK Hospital. She was immediately transferred to Cincinnati Children's Hospital because the issues identified at birth required more specialized care than the UK facility was equipped to handle. Tragically, due to her C-section recovery and ongoing heart issues, Mariah's mother was unable to join her immediately in Cincinnati, which added immense stress to an already critical situation.
II. Complex Diagnoses and Immediate Intervention
Upon arrival at Cincinnati Children's Hospital, Mariah was given several critical diagnoses:
1. Fused Kidneys (Congenital Condition) Mariah was found to have abnormally small fused kidneys, a congenital condition where the kidneys fail to fully separate as they move into place. This dramatically increases her risk for future kidney injury and failure.
2. Cloacal Malformation She was also diagnosed with a cloacal anomaly malformation, a rare birth defect where the rectum, vagina, and urinary tract merge into one singular common channel instead of three separate ones. This requires complex surgeries for separation to achieve normal function and necessitates long-term care for urinary, bowel, and reproductive health. Immediate Life-Saving Procedures Mariah was rushed into surgery to create a channel for urine to exit her body and to install a colostomy bag to collect feces. As a direct result of her condition and the necessary immediate procedures, Mariah has been fed using a feeding tube her entire life.
III. The Battle with Cancer and Genetic Roadblocks
In the search for answers regarding her initial malformations, doctors performed genetic testing. Unfortunately, the results offered no syndrome name or guidance for the treatment plan, suggesting two random, unrelated problems. However, the testing delivered another unexpected and critical diagnosis:
3. RB1 Gene Mutation and Bilateral Retinoblastoma The genetic test revealed the presence of the RB1 gene mutation, the first identified tumor suppressor gene, which increases the risk of uncontrolled cell division and tumors. Shortly after, an 11mm tumor was found behind Mariah’s right eye, leading to the official diagnosis of retinoblastoma eye cancer. The cancer subsequently spread to the left eye, officially changing the diagnosis to Bilateral Retinoblastoma (cancer in both eyes). Mariah begins a grueling battle with chemotherapy. The chemo initially halted the growth of new tumors and stabilized the large tumor. However, Mariah became critically ill due to being auto-immune compromised. Chemo was paused while she recovered, only for her to become seriously sick again a few weeks later, this time with life-threatening septic blood. She nearly lost her battle, making it an emotionally devastating experience for the family.
Monitoring Plan and Cancer Effects
The difficult decision was made to stop chemotherapy altogether, as her body could no longer tolerate the treatments. Thankfully, the tumor remains stable. The current plan is intense, active monitoring, which includes monthly operating room visits requiring overnight stays and anesthesia to evaluate the tumor and search for any new development.
IV. Additional Challenges and Current Treatment
Obstacles During this period, Mariah’s growth was naturally slow due to her health issues and the effects of chemotherapy. A new challenge emerged when her mother noticed range of motion issues in her leg.
4. Severe Hip Dysplasia Mariah was diagnosed with another separate, rare condition: Severe Hip Dysplasia. If not addressed quickly, this condition will prohibit her ability to crawl, stand, and walk in the future. The only corrective action is a major hip surgery requiring an immediate full leg cast, extending from the hip to the ankle, and holding the leg fully extended. This cast is expected to stay in place for 1 to 2 years. Depending on how the hip heals, additional surgeries and/or casting may be necessary in the future. Renal Failure and Dialysis The chemotherapy, while stabilizing the cancer, caused severe kidney injury, resulting in renal failure. To treat this life-threatening condition, Mariah now undergoes mandatory dialysis treatment three times a week (Monday, Wednesday, and Friday) until she can receive a kidney transplant. Missing a single treatment is a risk to her life.
Compounding Surgical Complications Mariah ultimately needs a kidney transplant, but she is currently too small. The plan is to begin growth therapy in April 2026 if all goes well. However, to even be deemed medically stable enough for the transplant wait list, her other rare conditions must be addressed. The hip dysplasia surgery is urgent, but the affected hip is on the same side as the colostomy bag. The hip surgery cannot proceed without reversing the colostomy bag, which itself cannot be removed until the complex surgeries needed to correct the cloacal malformation are performed. To complicate matters further, recent imaging showed that her internal organs are not in their normal anatomical positions but are in varying, tangled positions, making the necessary separation surgery extremely complex.
V. The Family's Immediate Needs Today, 19 months later, the family is at a critical juncture and needs a village of support. Cincinnati Children's Hospital is the only facility equipped to handle Mariah’s combination of rare, critical, and unrelated health issues. The hospital is 131 miles one way from their home in Danville, Kentucky. The mother cannot return to work due to the demands of Mariah's medical needs and raising Mariah's 4-year-old big sister, Alilah. The family drives approximately 800+ miles per week (3,200-3,500 miles per month) for mandated dialysis treatments and other critical appointments.
Critical Financial and Logistical Needs The family’s current vehicle, an older Acura, has broken down three times en route to or from Cincinnati, requiring over six thousand dollars in repairs. It is no longer a reliable form of life-saving transportation and must be replaced. This need is compounded by the following requirements:
1. New Reliable Transportation: They urgently need a new vehicle, preferably a minivan with captain seats or a mid-sized SUV with third-row seating. The vehicle must safely accommodate: - A specialized, medical-grade car seat designed for the two-year, full-leg cast (which requires space to hold the leg fully extended). - Alilah’s toddler car seat. - All of Mariah's medical supplies and equipment.
2. Creation of a Family Support Fund: A fund is needed to cover the continuous financial strain, including: - Gas for the 800+ weekly medical miles. - Car insurance and vehicle maintenance (like regular oil changes). - Medication co-pays, rent, utilities, and food (especially while traveling/during overnight stays).
3. Emergency Lodging Funds: Funds are needed for hotel stays during dangerous winter travel conditions (snow/ice). Insurance does not cover these costs, and the Ronald McDonald House does not accept dialysis patients for outpatient treatment or bad road conditions. Missing a dialysis treatment puts Mariah’s life in danger.
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