Why Nationwide?
Out of all the charities out there that we could donate to, why did we choose Nationwide Children’s Hospital (NCH)? That's an easy answer. NCH is special to us here at Terran Coffee. We lost our son back in 2011 to a rare genetic disorder called Menkes Disease. Fast forward to a decade and we were blessed with another son. Unfortunately, our son Ethan was born with the same rare disease that took his brother Xander’s life.
In 2011, little was known about Menkes. The staff at the University of Wisconsin Children’s Hospital did everything they could. Xander passed on July 10th, 2011. When we found out Ethan had the same rare genetic disorder, we reached out to a doctor we learned about after our son Xander had passed. Dr. Stephen Kaler and the team at Nationwide Children’s Hospital have given Ethan a chance at life. Allow me to introduce you to nationwide Children's Hospital, Dr. Stephen Kaler, and Menkes Disease.
Nationwide Children's Hospital in Columbus, Ohio, stands as a pillar of pediatric healthcare, offering a wide array of services to support the health and well-being of children and their families. With a compassionate approach and a commitment to excellence, this hospital is more than just a medical facility; it's a place where healing begins and hope flourishes. We know this from firsthand experience here. Here’s what we can tell you about this incredible place from a little research and some of that firsthand experience.
Comprehensive Pediatric Care
At Nationwide Children's Hospital, every child is given the utmost care and attention. The hospital is equipped with 673 pediatric beds and operates as a teaching hospital affiliated with the Ohio State University College of Medicine. It offers comprehensive pediatric specialties and subspecialties to infants, children, teens, and young adults aged 0–21 throughout Ohio and the surrounding regions. In certain cases, it also extends its care to adults requiring pediatric attention.
Specialized Services and Programs
The hospital is renowned for its specialized services, including the Child Assessment Center, Fostering Connections Program, and the Non-Accidental Traumatic Brain Injury Clinic. These programs are designed to address the unique needs of children who have experienced trauma or require specialized medical attention.
The Center for Family Safety and Healing
A key component of Nationwide Children's Hospital is The Center for Family Safety and Healing. This center is dedicated to breaking the cycle of family violence and restoring hope for those impacted. It provides comprehensive evaluation and management of child maltreatment, offering both inpatient and outpatient services.
Family-Centered Support
Understanding that illness affects not just the patient but the entire family, Nationwide Children's Hospital embraces a family-centered care model. The hospital provides resources to help families cope with the challenges of a child's health condition. Services include assistance with coordinating a child’s services, support groups, and access to information about available services.
Going Beyond Medical Care
Nationwide Children's Hospital goes beyond medical care, offering support for the whole family during a child's hospital stay. The Family Resource Center is a haven for families, providing amenities such as cell phone charging stations, laptop and iPad usage, and even free haircuts and massage therapy sessions.
A Commitment to the Community
As one of the country's largest not-for-profit freestanding pediatric health care networks, Nationwide Children's Hospital is deeply committed to the community. With nearly 12,000 hospital staff and 1,000 medical staff, the hospital has been providing the best possible care since 1894.
Unraveling Menkes Disease: The Pursuit of Healing at Nationwide Children’s Hospital
Menkes Disease is a rare genetic disorder that affects copper levels in the body, leading to severe developmental issues, particularly in the brain and nervous system. It is a condition that primarily affects male infants and is characterized by symptoms such as floppy muscle tone, seizures, and failure to thrive.
Dr. Stephen Kaler’s Lifelong Commitment
At the forefront of the battle against Menkes Disease is Dr. Stephen G. Kaler, a leading authority on this disorder. His dedication to understanding and treating Menkes Disease spans over three decades. Dr. Kaler’s expertise is not just in clinical care but also in groundbreaking research. He has been instrumental in developing therapeutic approaches that have the potential to change the lives of those affected by Menkes Disease.
NIH: Advancing Knowledge and Care
The National Institutes of Health (NIH) plays a crucial role in the research and study of Menkes Disease. Through clinical trials and studies, the NIH seeks to improve the understanding of this disorder and explore new treatment options. Their commitment to advancing care for people with Menkes Disease is unwavering, as they encourage participation in clinical research to find better ways to detect, treat, and prevent the disease.
Nationwide Children’s Hospital: A Hub of Hope
Nationwide Children’s Hospital in Columbus, Ohio, is a beacon of hope for families dealing with Menkes Disease. The hospital’s Menkes Disease Clinic provides comprehensive diagnostic, treatment, and support services to those affected. Established in November 2019 and led by Dr. Kaler, the clinic offers a multidisciplinary approach to care, including opportunities to participate in FDA-approved Expanded Access clinical protocols and trials of experimental therapies.
Innovative Treatments and Supportive Care
The clinic at Nationwide Children’s Hospital is exploring experimental clinical protocols to evaluate potential treatments for Menkes Disease, such as Copper Histidinate, Northera, and ATP7A viral gene therapy. These innovative treatments are part of a broader effort to improve the lives of children and families impacted by Menkes Disease and work toward more complete treatment solutions.
Community and Family Engagement
Understanding the profound impact Menkes Disease has on families, Nationwide Children’s Hospital ensures that affected families are linked to medical, educational, psychosocial, and financial support services in their local communities. The hospital identifies resources to assist parents in meeting the unique needs of their child, maintaining a working relationship between the clinic staff and the child’s primary care physician.
The collaboration between Dr. Stephen Kaler, the NIH, and Nationwide Children’s Hospital represents a united front in the fight against Menkes Disease. Their combined efforts in research, clinical care, and family support are paving the way for a future where this challenging condition can be managed more effectively, offering hope to those who once faced a bleak prognosis.
In recent news, the team working on early detection and a treatment for Menkes Disease received additional funding for ATP7A gene therapy. Nationwide Children's Hospital is more than just a healthcare provider; it's a sanctuary for healing and a community partner dedicated to the well-being of every child and family it serves. With its comprehensive services, specialized programs, and family-centered approach, it continues to be a beacon of hope for many, like our family.
For these reasons and so many more, a portion of every sale of Terran Coffee goes to Nationwide Children’s Hospital. feel even better with every sip knowing you're helping to make a difference in the lives of children and families in need.