From Tornado to Triumph: Mandy Aberegg on Raising Resilient Kids with Hemophilia B

What do you do when your baby is born covered in bruises, and no one has answers?

In this episode, Mandy Aberegg shares her powerful journey as a mother of two children with Hemophilia B—and how she turned fear into fierce advocacy. Her story will leave you inspired, informed, and ready to take that next brave step forward.

Episode Overview

When Mandy Aberegg’s first child was born, she had no idea she was a spontaneous carrier of Hemophilia B. What followed was a whirlwind of misdiagnoses, medical fear, and hard-earned lessons in advocacy. In this heart-opening conversation, Mandy shares the emotional and practical journey of parenting two kids with bleeding disorders, learning to stand up to doctors, and finding community through the Coalition for Hemophilia B. Her story is a testament to resilience, maternal strength, and the power of speaking out.

What You’ll Learn

1. Why trust your instincts—and demand answers—when your child’s health is at risk
2. The emotional toll and transformation that follows an unexpected diagnosis
3. How one mother learned to speak up to doctors, ask the right questions, and demand better care
4. The importance of community, camps, and connection for children and parents alike
5. How the Coalition for Hemophilia B helps families feel seen, heard, and empowered
6. What to do when you feel overwhelmed, scared, or unsure about the future

Episode Highlights

1. [00:49] Mandy shares how her son’s bleeding wouldn’t stop after birth
2. [01:34] The emotional moment when doctors said “something is wrong with your son”
3. [02:15] What it’s like to parent through fear and confusion in the early days
4. [04:51] Deciding to have another child despite unknowns—and what happened next
5. [06:56] Fighting to get her daughter’s mild hemophilia diagnosis taken seriously
6. [07:56] Discovering the Coalition for Hemophilia B and attending her first symposium
7. [08:18] The life-changing moment when 800 people said “yes” to her daughter having factor at home
8. [09:08] How Mandy built a care plan and learned to advocate effectively
9. [10:39] Advice for new families on being heard in the doctor’s office
10. [11:21] Why camp matters—for confidence, independence, and pride
11. [12:49] Preparing for the day your child manages their care on their own
12. [13:42] What Mandy would tell her past self: “Join the Coalition. You are not alone.”

Meet the Guest

Mandy Aberegg is a devoted mother, fierce advocate, and respected voice in the Hemophilia B community. After a surprise diagnosis in her first child and later in her daughter, Mandy transformed fear into empowerment—learning how to stand up to healthcare providers, advocate for her family, and connect others to the community and resources that changed her life. Today, she’s a proud parent, mentor, and shining example of resilience.

Tools, Frameworks, or Strategies Mentioned

1. Notebook of questions: A beginner’s tool for overwhelmed parents
2. Symposium & community events: Fuel for empowerment and education
3. Infusion training through camp: Building confidence and independence in kids
4. School and doctor communication plans: Essential advocacy strategies
5. Factor at home: A must-have that many don’t realize they can ask for

Closing Insight & CTA

“You feel alone when you go into these things, but when you leave, you come out as family.” - Mandy Aberegg

Start your journey today. Visit hemob.org to find upcoming events, resources, and the support you’ve been looking for. You are not alone.

Additional Resource & Links

1. Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
2. Subscribe to the podcast: https://pod.link/1765188875