Welcome to the Warrior Moms Living with Rare Disease Community!
We are a community of strong, passionate, and caring moms who are dedicated to supporting each other through the challenges of raising a child with a rare disease.
Caring for a child with a rare disease can be overwhelming and isolating, but you are not alone. Here, you’ll find a safe and supportive space to share your experiences, ask for advice, and find resources to help you and your child thrive.
As a member of this community, you’ll have access to a network of warrior moms who understand the unique challenges of caring for a child with a rare disease. You’ll find strength in connecting with others who have similar experiences, and you’ll have a platform to share your own story and inspire others.
We encourage you to ask questions, offer support, and engage in meaningful conversations with other members of the community. Whether you need advice on managing symptoms or want to share a small victory, this is the place to do it.
We’re committed to providing you with the resources you need to be the best warrior mom you can be. From educational articles and expert advice to community events and local resources, we’re here to help you navigate the ups and downs of your journey.
Thank you for joining us on this journey. We’re honored to have you as a member of the Warrior Moms Community and we look forward to supporting you every step of the way.
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.
- From the Eyes of a Child: Having a Sibling with a Rare Conditionby JCR on September 27, 2023
Hi my name is Tatum and I’m 13 years old. I have an older sister named Avery who is 18. She has special needs and was born with a rare condition called Williams Syndrome. When I was younger, I remember always knowing she was different, but I wasn’t exactly sure why. As I matured, I started to understand more as to why she was different. I began to realize that everyone has something that may not be easy to deal with, but you have to roll with what life gives you. It was not easy though. I […]
- Empowering Kids with Rare Diseases: Thriving Through School Challengesby benmunoz on August 21, 2023
Children dealing with rare diseases can effectively handle school challenges through smart strategies and the right help. First, clear communication among parents, teachers, and school staff is key. This helps everyone understand the child’s special needs and work together to provide what’s necessary. Creating a customized learning plan, like an Individualized Education Plan (IEP) or a 504 Plan, can make sure the school environment suits the child’s needs. Empowering kids with skills to […]
- Introductionby StephanieW on August 12, 2023
Hello, my name is Stephanie. I have a daughter who is now 17 years old and has been diagnosed with several chronic conditions, which include chiari malformation, syringomyelia, craniocervical instability, POTS, dysautonomia, hEDS, pelvic floor dysfunction and now her large intestines are not working. We live in MS but have to travel far and wide for treatment. We leave for NY tomorrow for a week of testing on her stomach and small intestines to see if those organs are working correctly. […]
- Free flight resource for patients traveling far from home for careby VickiPALS on August 9, 2023
Hello! I’m posting here today to share about PALS SkyHope. PALS SkyHope, is a 501 (c)(3) non-profit, founded in 2010, that began in response to the growing population of people with life threatening or chronic medical conditions that needed compassionate air transportation to medical appointments. PALS facilitates FREE flights by utilizing our charitable aviation network. This includes both volunteer pilots operating private aircrafts, as well as commercial partners. Are you currently […]
- Aging out processby Samantha on July 27, 2023
I always embraced having a child with a rare condition. With every year I dealt with what was put on my plate. I had a great support system within the school district we were in. Elementary, middle school, and part of high school was in NY. We then moved to Florida and my daughter completed her 10th, 11th, and senior yr in our local high school. I knew at some point I wanted my daughter to have some autonomy and I also knew I needed to let go of the reigns and find a place that she could live […]