Connect with warrior moms who understand and inspire
Welcome to Warrior Moms Living with Rare Disease — a supportive online community for mothers raising children with rare diseases. Here, you’ll find compassion, understanding, and real connection with moms who truly get what you’re going through.
Caring for a child with a rare disease can feel overwhelming and lonely, but you are not alone. Our community is built by strong, passionate, and caring warrior moms who share advice, experiences, and encouragement every day.
As a member, you’ll have access to:
- A safe and supportive space to share your story and find encouragement.
- A network of warrior moms who understand your journey and offer practical insights.
- Resources and expert advice to help you manage challenges and celebrate milestones.
Whether you’re seeking emotional support, medical insights, or simply want to connect with others who “get it,” this is your place to belong.
Join Warrior Moms Living with Rare Disease today and discover the strength that comes from community. Together, we lift each other up, celebrate victories big and small, and remind every mom — you are never alone on this journey.
Feature Article: Warrior Dad
TJ, Warrior Dad
TJ is a warrior Dad and the Executive Director of Ben’s Friends, as well as a rare disease patient himself. Currently celebrating his 47th wedding anniversary, TJ had to retire from his medical career due to his own illness and found solace in Ben’s Friends. With 14 adopted children, each facing their own special needs such as neurological disorders, cancer, autoimmune conditions, diabetes, and kidney disease, TJ’s family has navigated numerous challenges. Unexpectedly becoming caregivers to their grandchildren due to disability and the loss of their parents, they have embraced their unique journey. As they near the end of this chapter, with only two children left at home and a temporary resident of 24 years, they cherish the resilience and love that have carried them through.
Parenting a Child With a Chronic Illness
Parenting a child with chronic illness is challenging, but it’s important to establish clear expectations, discipline, and consistent limits. Open communication, maintaining a predictable schedule, and promoting treatment adherence are key. Avoiding power struggles and offering choices can help the child feel in control. Self-care is crucial for parents, while encouraging children to express their feelings and providing coping strategies is beneficial. Working closely with the school during transitions is essential. By implementing these strategies, parents can effectively support their child with chronic illness and help them navigate the challenges they face.
Latest Discussions
- Meet Sharon F. Terry — A Warrior Mom Who Fought for Rare Disease Families
by BF_Admin on October 25, 2025When her children were diagnosed with the ultra-rare condition Pseudoxanthoma elasticum (PXE), Sharon Terry didn’t wait. She rolled up her sleeves, stepped into advocacy, and transformed her family’s crisis into a movement that has helped thousands. From Family Fear to Founding a Movement Sharon’s journey began when her twins and family faced PXE, a genetic disease affecting connective tissues and the cardiovascular system. Distrustful of waiting for “someone else” to act, Sharon and […]
- Last Chance to Support Ben’s Friends in 2024 – Every Donation Counts!
by ModSupport on December 30, 2024As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and it lays the foundation for the vital work Ben’s Friends will accomplish in 2025. While we haven’t quite reached our campaign goal yet, there is still time for you to help. 1) Donate Today With just two days left, your donation can make a lasting impact. Every dollar […]
- From Isolation to Connection: The Role of Community Supportby ModSupport on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our community members. In just a few moments, she captures the essence of why your support for Ben’s Friends is so crucial. Watch Jaz’s Powerful Message Now Jaz’s words remind us of the profound difference we make together. Your donation helps transform loneliness into […]
- See How Ben’s Friends Changes Lives + Double Your Impact
by BF_Admin on December 16, 2024Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already had their donations matched). If you want to double your impact there is still time. Donate today! As we continue our year-end campaign, I wanted to share with you the incredible impact Ben’s Friends has on those facing rare diseases. Here are just a few testimonials from our community members: […]
- Exciting Update: Double Your Impact for Rare Disease Support!by ModSupport on December 13, 2024
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: Thanks to the incredible generosity of supporters like you, we’ve raised almost $11,000 towards our $50,000 goal. This is a fantastic start, but with just three weeks left, we still have a way to go to ensure we can continue providing vital support to our rare disease […]
