Connect with warrior moms who understand and inspire
We are a community of warrior moms – 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.
Latest Discussions
- Become a Champion for Our Rare Disease Communityby ModSupport on November 19, 2024
Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mean to be a fundraiser? As a fundraiser, you create your own personal fundraising page and share it with your network. It’s a powerful way to amplify our message and reach more people who may want to support our rare disease communities. The Impact of Sharing Your Story […]
- Join Us in Strengthening Our Rare Disease Communityby ModSupport on November 15, 2024
I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to individuals like you who are affected by rare diseases. Today, we’re launching our annual “Friends Helping Friends” campaign. Our goal is to raise $50,000 by the end of the year to ensure that we can continue to provide and expand our vital support services. How Your Support Will Make a Difference: […]
- An Opportunity to Strengthen Our Rare Disease Communityby ModSupport on November 13, 2024
I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives us all a chance to strengthen and grow our rare disease support networks. This initiative isn’t just about raising funds; it’s about coming together as a community to ensure that no one faces a rare disease alone. Hopefully, you’ve experienced firsthand the power of connecting with others who […]
- Welcome 10/22by ModSupport on October 22, 2024
I want to wish a warm welcome CoolCat and ktl! CoolCat joins us from Texas and ktl does as well! Welcome to Warrior Moms! Sharon from ModSuppport 1 post – 1 participant Read full topic
- Good News About Genetic Screening In The UKby ModSupport on October 3, 2024
This feels like a very sensible move, appropriately focussed to me. Richard bbc.com First newborns join screening for more than 200 rare diseases The new study uses genome sequencing to detect more diseases earlier, when they can still be treated. 1 post – 1 participant Read full topic
