Charley's Angels VACTERL Foundation
Together, we can bring comfort, care, and solutions to those who need it most. 🤝
Our Mission
We believe every family affected by VACTERL syndrome deserves hope, connection, and access to resources.
Our mission is to:
📚 Empower Families with Resources
Provide tools, knowledge, and connections they need to navigate the complexities of VACTERL syndrome. We stand by their side every step of the way.
🤝 Build a Network of Support
Isolation can be overwhelming. We've created spaces for families, caregivers, and professionals to connect, share, and grow together.
🔬 Advocate for Awareness and Research
VACTERL syndrome is rare, but the need for answers is significant. We are committed to spreading awareness, funding research, and driving innovations that lead to improved outcomes.
🌟 Honor Charley’s Legacy
Charley taught us the power of hope, determination, and the impact one life can have on so many. Through our work, we honor her memory by ensuring that her journey inspires change for others facing similar challenges.
Guided by Charley’s light, we are committed to making sure no one walks this path alone.
Hello everyone! My name is Jeremy Higginbotham, My wife Santana Higginbotham's and myself are the Co-Founders of Charley's Angels VACTERL Foundation Inc. First, let me say thank you to all of our supporters and VACTERL families for being here to help. We could not do it without you.
Charley's Journey and Our Mission
Charlotte (aka Charley), our youngest of 8, was born with VACTERL and underwent 19 surgeries in 17 months, including 3 open-heart surgeries. Despite it all, she lit up every room with her smile. Charley fought through so much and never let anything keep her down.
Before Charley, my wife and I had never heard of VACTERL. We felt lost and alone. Our friends and family helped, but it was overwhelming. Even the doctors struggled to know what to prioritize for her care. My wife learned all she could and often had to guide the doctors to look at the bigger picture. It was a daily struggle for answers.
After Charley’s 3rd heart surgery, she contracted two viruses. She was released from the hospital the next day, but 6 hours later, she passed away with no answers.
Raising Awareness and Supporting Families
We believe Charley came to us for a purpose. We had never heard of VACTERL, and many doctors hadn’t either. We want to change that. Our goal is to bring awareness to this rare syndrome and make sure no one feels alone like we did.
After a year of work, we officially launched Charley’s Angels VACTERL Foundation Inc. in March 2023. We want to connect VACTERL families, share stories, and ensure no child goes without necessary medical supplies. We also want to offer emotional support and relief from the stress and heartache. Thank you to all our VACTERL families, donors, supporters, doctors, nurses, therapists, and board members. Without you, none of this would be possible. YOU ARE NOT ALONE! God bless you and your families.
About Us
At Charley’s Angels VACTERL Foundation, we’re dedicated to transforming the lives of families affected by VACTERL syndrome.
As a rare condition, VACTERL disease often lacks-
attention
studies
resources
necessary to support those affected.
We understand the unique challenges that come with VACTERL association.
Here’s how we make an impact:
🌟
Connecting Families with Specialists:
We help families find the best medical professionals and specialists experienced in treating VACTERL syndrome.
How this helps: The healthcare system can feel overwhelming. We ensure families have access to expert care and guidance.
🚗
Transportation Assistance:
Doctor’s appointments, therapy sessions, or hospital stays, we provide transportation assistance and services.
How this helps: Families struggle with frequent medical visits and we aim to remove that barrier.
📦
Life-Changing Medical Resources
From adaptive equipment to specialized supplies, we deliver the tools families need to improve their quality of life.
How this helps: Proper resources can make daily living easier for children and adults with VACTERL syndrome.
❤️
Emotional and Community Support
We foster an amazing supportive group, in-person and online, where families can share their stories, advice, and encouragement.
How this helps: Families find strength in connection and knowing they are not alone in their journey.
🔬
Partnerships with Researchers and Advocates
We work alongside researchers and organizations to foster innovation and raise awareness about VACTERL syndrome.
How this helps: Advancements in research can lead to better treatments, earlier diagnoses, and improved outcomes.
📚
Awareness and Education Campaigns
Through our dedicated community we spread knowledge about VACTERL syndrome to empower families and educate communities.
How this helps: Awareness leads to understanding, funding, and better care for those affected.
If you or anyone you know could benefit from our resources just click "get help now" and fill our our form. 🤝
About VACTERL
Click on any image below to learn about VACTERL
V - Vertebral Defects 🦴
Issues with the spine or vertebrae are common in individuals with VACTERL. These may include missing or misshapen vertebrae, leading to scoliosis or other structural challenges. Early diagnosis and monitoring are essential for managing mobility and growth concerns.
A - Anorectal Malformations 🚽
This includes conditions where the anus or rectum does not develop properly. Some individuals may require surgery shortly after birth to correct these issues and help establish normal bowel function.
C - Cardiac Defects ❤️
Heart abnormalities, such as ventricular septal defects (holes in the heart) or more complex conditions, are often part of VACTERL. Many cases are treatable through medication or surgical intervention, allowing individuals to lead healthy lives.
T - Tracheoesophageal Fistula 🌬️
This occurs when there is an abnormal connection between the windpipe (trachea) and the esophagus. It can cause feeding and breathing difficulties, often requiring surgical correction shortly after birth.
E - Esophageal Atresia 🍼
In this condition, the esophagus does not connect properly to the stomach, causing difficulty swallowing. Surgical repair is typically necessary to allow normal feeding and digestion.
R - Renal (Kidney) Anomalies 💧
Kidney malformations or functional issues are common, ranging from one kidney being smaller than normal to more severe complications. Regular monitoring helps ensure proper kidney function throughout life.
L - Limb Abnormalities ✋
This can include missing, fused, or underdeveloped fingers, arms, or legs. These challenges often require physical therapy, prosthetics, or surgical interventions to enhance mobility and functionality.
V - Vertebral Defects 🦴
Issues with the spine or vertebrae are common in individuals with VACTERL. These may include missing or misshapen vertebrae, leading to scoliosis or other structural challenges. Early diagnosis and monitoring are essential for managing mobility and growth concerns.
A - Anorectal Malformations 🚽
This includes conditions where the anus or rectum does not develop properly. Some individuals may require surgery shortly after birth to correct these issues and help establish normal bowel function.
C - Cardiac Defects ❤️
Heart abnormalities, such as ventricular septal defects (holes in the heart) or more complex conditions, are often part of VACTERL. Many cases are treatable through medication or surgical intervention, allowing individuals to lead healthy lives.
T - Tracheoesophageal Fistula 🌬️
This occurs when there is an abnormal connection between the windpipe (trachea) and the esophagus. It can cause feeding and breathing difficulties, often requiring surgical correction shortly after birth.
E - Esophageal Atresia 🍼
In this condition, the esophagus does not connect properly to the stomach, causing difficulty swallowing. Surgical repair is typically necessary to allow normal feeding and digestion.
R - Renal (Kidney) Anomalies 💧
Kidney malformations or functional issues are common, ranging from one kidney being smaller than normal to more severe complications. Regular monitoring helps ensure proper kidney function throughout life.
L - Limb Abnormalities ✋
This can include missing, fused, or underdeveloped fingers, arms, or legs. These challenges often require physical therapy, prosthetics, or surgical interventions to enhance mobility and functionality.
This rare disorder affects multiple organ systems and presents a unique set of challenges for each individual diagnosed.
Some Quick Facts-
Multisystem Involvement:
About 60% to 70% of individuals with VACTERL Association have anomalies in three or more of the VACTERL systems (Vertebral, Anal, Cardiac, Tracheo-Esophageal, Renal, and Limb).
Gender Distribution:
The disorder affects males slightly more often than females, with a male-to-female ratio of about 1.5:1. Although females statistically have more severe symptoms.
Prevalence:
VACTERL Association occurs in approximately 1 in 10,000 to 1 in 40,000 live births, making it a rare condition.
Under Construction
Support comes in many forms, and every effort makes a difference. While direct donations are critical to our mission, you can also play a vital role:
💬
Spread Awareness:
Follow us on social media and share our mission to help more families discover the resources they need.
📨
Stay Connected:
Join our mailing list to stay informed about upcoming events, fundraisers, and progress in supporting VACTERL families.
Together, we can create a ripple effect of support, ensuring that families affected by VACTERL never feel alone.
We understand the unique challenges families face when navigating the complexities of VACTERL association. Whether it’s connecting you to resources, providing financial assistance, or simply being a source of emotional support, we’re here for you every step of the way.
Together, we can help make this journey a little less daunting.
Fill out the form below to let us know how we can assist you. We will reach out to you with the next steps.