When a child’s health is at stake, every decision feels monumental, every day carries uncertainty, and every moment away from home is fraught with emotional weight. For Neisha and her 11-month-old son, Azaire, this reality began on the serene Caribbean island of Grenada and unfolded across the bustling streets of New York City. Their story is a testament to courage, parental intuition, and the transformative impact of Ronald McDonald House New York (RMH-NY), which provided compassionate care, emotional support, and family-centered services throughout Azaire’s medical journey.
Early Signs and Maternal Instinct
Azaire was born with elevated bilirubin levels, a condition initially diagnosed as routine newborn jaundice. The family was reassured that this would resolve naturally. Yet, Neisha noticed that as weeks passed, his yellowed skin persisted, and his cries grew more frequent.
“At the three-month mark… his skin started to turn yellow, and he began to cry all the time. As a mother, I just knew something was wrong.
Her instincts proved correct. Blood tests revealed dangerously high liver enzyme levels, signaling a serious liver condition. The pediatrician delivered the news bluntly: without treatment abroad, Azaire’s life was at risk.
“If I want my son to live, I have to seek help abroad. We booked the flight to the U.S. within days.”
This decision marked the beginning of a medical journey that would bring them far from the familiarity of home and into the care of some of the nation’s leading pediatric specialists.
Arrival in New York City and the First Surgery
Azaire’s first stop was Mount Sinai, where he underwent a Kasai procedure—the standard initial surgery for infants diagnosed with biliary atresia, a rare liver disease that obstructs the bile ducts, causing liver deterioration and life-threatening complications.
“The Kasai… almost immediately we could tell that it failed. He experienced ascites, a swollen belly, and was extremely yellow. He was always crying.”
Biliary atresia affects roughly 1 in 10,000 to 15,000 newborns in the United States, making it a condition that requires specialized, coordinated care. The Kasai surgery, typically performed in the first few months of life, aims to restore bile flow from the liver into the intestines. When successful, it can delay or sometimes eliminate the need for a transplant. Unfortunately for Azaire, his Kasai surgery did not succeed, and the family quickly learned that a liver transplant would be essential for his survival.
“In December, the doctors told us that in order for him to live, he must have a liver transplant.”
Ronald McDonald House New York: A Home Away From Home
Amid this medical crisis, Neisha found stability at Ronald McDonald House New York. Arriving late at night, exhausted from travel and hospital discharge, she was welcomed in a way that immediately alleviated some of her anxiety.
The House’s environment is designed to support families navigating pediatric medical care. From meals and transportation to emotional support and community, RMH-NY enables parents to focus fully on their child’s health.
“It helps to relieve the mental burden that comes with not only being isolated but taking care of a child that you’re constantly worried about… you know that the social workers have it, the staff have it. They’re there for you.”
Understanding Biliary Atresia
To truly appreciate Azaire’s journey, it helps to understand biliary atresia. This rare liver disease occurs when the bile ducts, which normally carry bile from the liver to the gallbladder and small intestine, become blocked or absent. The blockage causes bile to accumulate in the liver, damaging liver cells and eventually leading to cirrhosis.
For infants, early intervention is critical. Symptoms often appear in the first weeks of life and include jaundice, dark urine, pale stools, and abdominal swelling. Left untreated, biliary atresia can be fatal. The Kasai procedure can restore bile flow, but its success is variable, and many children eventually require liver transplantation.
Azaire’s experience exemplifies both the urgency and complexity of the condition. After the Kasai failed, the family faced weeks of uncertainty before being placed on the liver transplant list at NYU Langone Health, where he ultimately received a transplant on January 29, 2025.
The Liver Transplant Journey
In January 2025, Azaire received a life-saving liver transplant at NYU Langone Health, performed by the exceptional Dr. Adam Griesemer. Since that transformative surgery, Dr. Jennifer Vittorio, his devoted pediatric hepatologist, has faithfully guided his post-transplant care and long-term liver management, providing expertise, compassion, and unwavering support every step of the way.
The transplant marked a pivotal milestone, but post-operative care requires vigilant monitoring. RMH-NY’s support allowed Neisha to remain close to the hospital while managing the day-to-day realities of infant care in a foreign city.
“Today, my favorite thing is the staff… especially when I’m here alone, the staff remembers my name, his name, and my room number. It makes you feel like you belong. Everyone says it’s a community, but you truly feel it with the staff.”
Beyond logistical support, the House offers emotional stability—a safe space to rest, reflect, and regroup during periods of intense stress.
“I think for me and my family, it helped me to feel like I have a family here. When my family is scattered.”
Sibling Support and Family Cohesion
While Neisha stayed primarily with Azaire, RMH-NY ensured that her older son, Amir, and other family members could visit and remain part of the care journey. Maintaining sibling relationships is critical in pediatric care, especially during prolonged hospitalizations.
“Although my family was facing a tragedy… these activities and that team really helped my son have a sense of normalcy.”
This includes access to play space, educational programs, and structured enrichment activities for children. RMH-NY recognizes that supporting siblings reduces stress for parents and contributes to the holistic care of pediatric patients.
Meals, Volunteers, and Community
One of the subtle but profound ways RMH-NY helps families is through meals and the friendly volunteers who serve them. The House provides daily, culturally diverse meals, often accompanied by cheerful volunteers who are excited to see the families every day.
“The volunteers help to lift the atmosphere. Sometimes when they’re about to serve food, there’s music… they’re cheerful, welcoming, and it makes you feel a sense of that true community that everyone talks about here.”
This focus on emotional support and social connection complements the medical care Azaire receives at the hospital, helping families navigate stress and isolation with a sense of belonging.
Preparing for the Future
Azaire’s ongoing care includes regular lab work and monitoring by specialists at NYU Langone. The family hopes to return to Grenada once he reaches his one-year liverversary, a symbolic milestone marking the first anniversary of his transplant. Until then, RMH-NY remains a safe harbor.
“Ronald McDonald House New York, it’s more than a house. It’s your family when your family is scattered, and it’s hope when you think all is lost.”
-Neisha, Azaire’s Mom
This sentiment captures the essence of RMH-NY’s mission: providing a foundation of hope, support, and stability during some of the most challenging moments in a family’s life.
Advice to New Families
For parents entering the House for the first time, Neisha emphasizes connection and hope:
“It’s okay to be sad, it’s okay to be angry, but don’t ever lose hope. Connect with the staff, the volunteers, and the families that are here. You’re not alone.”
These words reflect the dual focus of RMH-NY: practical assistance and emotional care, fostering resilience among families confronting pediatric illness.
Gratitude for Donors
Neisha also underscores the critical role of RMH-NY donors:
“Just knowing that we have a safe place where at night we can lay our head and let our burdens out on our pillow… just having that safe space is so crucial when you’re caring for a child.”
From housing and meals to social support and programs for siblings, every donation directly enhances the lives of pediatric patients and their families.
The Power of Family-Centered, Holistic Care
Neisha and Azaire’s story demonstrates the importance of family-centered care, holistic support, and emotional well-being in pediatric treatment. By addressing not only medical needs but also the social determinants of health—including housing, nutrition, sibling care, and mental health—RMH-NY ensures that families can focus on recovery rather than logistics.
For families traveling long distances, particularly those from countries like Grenada, RMH-NY is a bridge to health equity, enabling access to the highest level of pediatric care while maintaining family cohesion and emotional stability.
Why Support RMH-NY
Neisha’s story underscores the critical role of RMH-NY in:
- Reducing the emotional burden on families facing pediatric illness
- Providing holistic, family-centered care far from home
- Supporting children through social, emotional, and developmental programs
- Offering practical help with meals, transportation, and housing
- Promoting health equity by assisting families who travel long distances for specialized care
Her journey illustrates that the compassionate, comprehensive support from RMH-NY makes a profound difference for pediatric patients, siblings, and parents alike.
