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.
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