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The journey of caring for a child with rare disease or complex medical needs often leaves parents and caregivers isolated in their experience. While friends and family genuinely want to help, many struggle with knowing how to truly support without overstepping or saying the wrong thing.

Amy (Board) Bradford brings her decades of experience working with rare disease communities to share powerful, actionable strategies for supporting caregivers effectively. This conversation goes beyond the typical "let me know if you need anything" platitudes to provide specific ways supporters can take meaningful initiative.

The episode reveals three foundational approaches that can transform how we show up for caregivers: first, taking time to learn the specialized medical language of a condition rather than expecting caregivers to constantly educate; second, remembering to ask about the caregiver's emotional experience rather than focusing exclusively on the child's medical journey; and third, creatively adapting environments and activities to be more inclusive without burdening families with all the planning.

As Amy shares from her experience running camps for children with bleeding disorders, "We instilled in our staff that this was a week that we would never say no to our children." This philosophy of creative problem-solving and adaptation offers a powerful model for how supporters can reframe their thinking to create more inclusive experiences.

Whether you're a friend, family member, or community supporter looking to make a meaningful difference in a caregiver's life, or if you're a caregiver wanting to help your support circle understand how to better show up for you, this episode provides the language and practical steps to strengthen these crucial connections. Send this episode to someone in your support circle today – no explanation needed.

About Amy (Board) Bradford: Amy is an accomplished patient engagement leader and global storyteller with the proven ability to build unwavering patient community connections in complex environments. She is the Director of Patient Engagement of Believe Limited, an agency dedicated to the Rare Disease, Health and Wellness, and Patient Connection and Community space.

Believe Limited, The Patient People: https://www.believeltd.com/

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
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Child Life Specialist, Brittany Luther, brings over twenty years of expertise to answer these questions in this emotionally powerful conversation. She explains how children naturally communicate their fears and process trauma through play—whether that's with specialized medical toys from organizations like The Butterfly Pig or simply through creative exploration with everyday items.

Brittany introduces two transformative concepts parents can immediately implement: "wonder" and "pause." By creating unhurried space to wonder with your child about their experiences and feelings, you open pathways for them to express themselves in their own time and way. This practice helps children work through medical trauma at their developmental level, restoring their sense of control and agency.

The discussion explores age-appropriate preparation strategies for medical procedures—from paper chain countdowns for preschoolers to detailed preparation plans for teenagers. Through the story of young Maren's journey with her stoma care, we see how consistent, honest communication paired with simple distraction techniques gradually transformed a painful daily procedure into a moment of empowerment and connection.

Perhaps most touching is the validation for parents who've had to perform painful procedures on their children. The guilt is real, but as Brittany and host Ashley demonstrate, these moments can ultimately strengthen the parent-child bond when approached with honesty, compassion, and support. Seeking help from child life specialists isn't a sign of failure—it's a powerful way to expand your child's circle of support and reclaim the joy of simply being their parent.

*After the episode recording, Brittany’s time was spent with a warm cup of tea and “Lemon Swirls” both in the comfort of her beautiful office and in the McGill Rose Garden for her quiet reflection and work to rest her voice!

Brittany Luther is a Certified Child Life Specialist with nearly 20 years of experience supporting children and families through medical challenges. With advanced training from Duke, Vanderbilt, and the Children’s Hospital of Philadelphia, she has worked in high-acuity settings including emergency care, oncology, and neurology. Now based in Charlotte, she combines part-time hospital work with her private practice, where she helps children, teens, and families navigate seasons of transition, diagnosis, and grief with compassion and hope.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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MaryJenner, a nurse with a creative heart, founded The Butterfly Pig after writing a children's book about embracing differences—a theme that would become central to her mission of transforming pediatric medical experiences through play. Her company creates realistic medical simulation tools that children can use with their favorite stuffed animals, helping them process everything from IV placements to ostomy care in a safe, empowering environment.

The power of these medical toys extends far beyond simple distraction. When children experience procedures as something happening to them, they often feel powerless and afraid. But when they can parallel process by caring for their own "patients," something remarkable happens—they begin to understand, cooperate, and even take pride in their medical journeys. Ashley shares how her daughter went from requiring restraint during stoma care to proudly showing her stoma to friends at school after playing with a doll that had the same equipment.

This transformation occurs because children naturally learn through play. By creating approximately 80 different realistic medical devices scaled for toys, The Butterfly Pig taps into children's innate processing mechanisms. Parents and healthcare providers report children who previously couldn't sit still during procedures becoming engaged participants when they have their own medical tools to work with. The benefits extend to siblings too, who develop understanding rather than fear when they can engage with medical equipment through play.

What began as a creative project has evolved into a movement that's changing how families experience healthcare. The Butterfly Pig has introduced a Wishful Wings program where supporters can purchase toys for families who need them, creating a community of care around children with medical needs. As Mary explains, each medical experience gives children "a different type of superpower" they can eventually use to help others, transforming challenges into strengths that shape who they become.

https://thebutterflypig.com/

https://www.instagram.com/TheButterflyPig

https://www.facebook.com/TheButterflyPig

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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How do you hold on to hope when you know your child is dying—and there’s no diagnosis, no cure, and no roadmap forward?
Co-hosts, Ashlyn Thompson & Ashley Milbourne are joined by Dr. Tasha Faruqui—award-winning pediatrician, rare disease parent, and now debut author—who invites us into the heart of her story, which inspired her forthcoming memoir: Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief, releasing September 16, 2025.

Dr. Faruqui's second daughter, Soraya, was born with a rare, undiagnosed condition that remains a mystery more than thirteen years later. Though trained in medicine, Tasha found herself unprepared for the emotional and existential weight of parenting a child with a limited life expectancy. What she searched for—but couldn’t find—was guidance through anticipatory grief: the complex, quiet mourning that begins long before loss. So, she wrote the book she needed—one that shines a compassionate and unflinching light on this often-overlooked experience faced by so many families.

Keep Your Head Up is not only a memoir—it’s a love letter to parents navigating the unthinkable. With honesty, warmth, and hard-earned wisdom, Dr. Faruqui offers a blueprint for how to keep living, loving, and even laughing in the midst of prolonged uncertainty. Through this conversation, she opens up about how she balances motherhood with medicine, why self-care is not selfish, and how her definition of hope shifted from curing her daughter to cherishing her—one beautiful, present moment at a time.

✨ Keep Your Head Up is available September 16, 2025. Pre-orders are available now on Amazon.
✨ 100% of proceeds will benefit organizations close to the Faruqui family’s heart.

This isn’t just a conversation—it’s a glimpse into the soul of a book that will change the way we think about parenting, medicine, and what it means to keep showing up with love. If you’ve ever faced the unknown, this is the episode—and the story—you didn’t know you needed.

Join her Instagram community (@thefaruqui5) for real-time insights, resilience, and inspiration!

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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As parents of children with complex medical needs, our hearts often ache with worry about our other children. Are they getting enough attention? Will they feel less important? Do they resent their sibling's conditions? These questions haunt us during late-night hospital stays and therapy appointments.

What we rarely discuss, though, is the remarkable beauty that emerges in these siblings' lives. Through heartwarming stories like seven-year-old Nora proudly telling her class about her sister's rare condition on Rare Disease Day, or Cole developing an extraordinary voice at a young age, we discover the gifts hidden within our challenging journeys.

Ashlyn & Ashley share their personal experiences raising both medically complex and typically developing children, revealing how these siblings develop profound empathy, advocacy skills, problem-solving abilities, and perspective far beyond their years. They discuss the importance of taking off what they call the "Sherlock Holmes hat" – that constant problem-solving mode parents develop – so that we parents can simply enjoy our children and create meaningful connections through small moments like car rides or special traditions.

Perhaps most striking is the resilience these children show. Despite hospital stays that separate families and the inevitable imbalance of attention, these siblings often demonstrate remarkable forgiveness, adaptability, and joy. They remind us that children have an extraordinary capacity to live in the moment and find happiness within challenging circumstances.

This conversation offers hope that while your family's path may look different than imagined, your children are developing unique strengths through challenges most families never face. Your "typical" children aren't just surviving this experience - with your love and attention to their needs, they're thriving in ways that will serve them throughout their lives.

Recommended Resources:

Supporting the Siblings with Wendy Plant, PhD - Excellent webinar for parents presented by Courageous Parents Network

Courageous Parents Network: Sibling Support

Child Life on Call: Supporting Siblings: How Child Life Specialists Can Help

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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Every parent of a medically complex child wonders: Will my child grow up knowing how deeply they are loved? Will they appreciate how hard I fought for them? In this episode, we bring you a powerful answer straight from someone who’s been there.

Annelise Frazier, born with a rare and complex medical condition, shares her story of growing up with surgeries, complications, and hospital stays—but more importantly, growing up surrounded by love. She reflects on the biggest gift her parents gave her: they loved her so boldly and advocated so fiercely that she never felt different or defined by her diagnosis. Instead, she felt like a kid—just a kid—who was deeply cherished.

For parents in the thick of this journey, this episode is a glimpse into the future—a message of reassurance that your child will remember the love more than the fear, the joy more than the hardships. Annelise’s perspective will remind you that your love and advocacy are not just necessary, but transformative.

Join Ashlyn & Ashley for this heartwarming conversation that will uplift and encourage you to keep going, keep loving, and keep believing in the beautiful life ahead for your child. *Spoiler, Annelise has the same condition as Ashlyn & Ashley's daughters!

Make sure to subscribe, share your thoughts with us, and connect with our community—we are all in this together!

Annelise Frazier is a small town bookstore owner diagnosed with Classic Bladder Exstrophy, Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Mast Cell Activation. She has been chronically ill since birth, but does not let that define her. She loves reading romance novels, baking allergy friendly treats, spending time with her family and raising her pet cat Fig and rescue Border Collie, Hollie. When not at her bookstore, she and her husband enjoy traveling the country searching for the greatest history museums. Annelise has spoken out for children with disabilities at many conferences and intends on using her background in medical research to provide a safe space for all those struggling with the daily life of medical complexities.

Shop & Support Annelise: Pig City Books

Bookstore Website: https://www.pigcitybooks.com/

Online Bookstore: https://bookshop.org/shop/pigcitybooks

Online Audiobook membership:

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

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Leah Darrow, renowned public speaker and mindset coach, joins Emily Whiting on the Empowered by Hope podcast to share her inspiring journey from faith-based public speaking to impactful mindset coaching. As mothers with children facing complex medical challenges, Leah and I connect deeply over our shared experiences in balancing personal passions with the demands of family life. Through her programs like Power Made Perfect and Motivated Mompreneur, Leah sheds light on how a Christ-centered approach can empower individuals to thrive and overcome life's obstacles.

Leah opens up about the crucial role mindset training played during her time in the NICU, both for herself and her son. Drawing from a decade of personal development and unwavering faith, she demonstrates how mindset practices can become second nature in times of crisis.

Mindset Practices:

• Let go of what you cannot control - write down what you can control and focus on that
• Your energy and your words matter - choose words of hope
• Do not try to go back to the life you had before
• Practice forgiveness and radical mercy, for yourself and others

Her story is a testament to resilience and the transformative power of focusing on what we can control, offering guidance to anyone grappling with intense emotional and physical challenges.

This episode emphasizes the strength found in community support, reminding us that by coming together, we can navigate life's challenges with grace and hope. Join us as we encourage each other to extend mercy to ourselves and others, fostering resilience and embracing change to build a brighter future.

Leah Darrow is a mindset coach, speaker, and mom of seven who helps women transform their lives through personal growth and faith. As the host of The Leah Darrow Podcast and creator of Power Made Perfect, Leah empowers women to live intentionally and unlock their God-given potential. Connect with her on Instagram @leah.darrow or at leahdarrow.com.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
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Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

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Join us for an exploration of pediatric feeding challenges as we sit down with Jaclyn Pederson, the dynamic CEO of Feeding Matters. Through Jaclyn's personal journey and professional insights, we uncover the critical, yet often sidelined, issue of pediatric feeding disorders. In a world where validation for these struggles was once elusive, Feeding Matters has championed the recognition of pediatric feeding disorder as a standalone diagnosis, bringing a sense of acknowledgment and relief to countless families.

This episode is a treasure trove for parents and caregivers seeking to understand the intricacies of pediatric feeding disorders. We highlight the subtle signs and symptoms that may suggest a feeding issue, and the pivotal role of parental intuition in navigating these challenges. As Jaclyn shares, finding knowledgeable care can be daunting in this emerging field, but she offers encouragement and resources that empower parents to become strong advocates for their children. Feeding Matters equips families with tools to effectively communicate with healthcare providers, ensuring that they are heard and understood.

The conversation doesn't stop at identifying the problem. We delve into the empowering work Feeding Matters does to support families, from their comprehensive online resources to the Power of Two coaching program. This episode promises insights and support that can make a significant difference in the lives of children and families touched by feeding disorders.

Resources:
FeedingMatters.org
Facebook
Instagram

Jaclyn Pederson, MHI

A system thinker and positive team builder, she uses transformational leadership principles to develop energized and efficient workgroups that influence significant organizational and systemic change for all affected by pediatric feeding disorder –such as the development of the expanded PFD Alliance. Jaclyn also manages Feeding Matters’ strategic partnerships with numerous professional associations including American Speech-Language-Hearing Association (ASHA), American Society of Parenteral and Enteral Nutrition, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
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Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon