ABOUT US

Struggle Bus Family is a community for and about those with special needs. We talk about our struggles, strives and thrives, and more. Being a parent or caregiver for someone with special needs is HARD and you are not alone.

We are real and raw in our support.

We work through the sense of isolation and being overwhelmed. Foster a sense of solidarity, share techniques and advice that have helped us and our kids get through the daily struggles of life and achieve some pretty awesome things along the way.

OUR PODCAST

Joni and Jess discuss the ongoing medical journey of Joni’s daughter who has been diagnosed with recurring and aggressive cholesteatoma. They explore the implications of the condition, the necessity of surgeries, and the emotional and physical impacts on Joni’s daughter. The discussion also touches on the challenges of explaining medical procedures to a child, the importance of monitoring this condition, and the options available for future surgeries. Throughout the conversation, they emphasize the resilience of Joni’s daughter and the support of their community. Watch Part 1 of Eva's Story in Episode 7: F@#$ Cholesteatoma https://youtu.be/cqJ-EGOI3Ec Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c #cholesteatoma Chapters 00:00 Introduction to Cholesteatoma 01:16 Understanding Cholesteatoma and Its Impact 04:37 Surgical Interventions and Their Consequences 10:16 Recovery and Coping Mechanisms 16:10 Monitoring and Future Considerations 21:22 Surgical Options and Decision Making 24:51 Struggles and Strives in Parenting Copyright 2025 Struggle Bus Family All rights reserved.
Episode 10: Eva’s Cholesteatoma Update – How It’s Going…
Jess and Joni open up about their own journeys with autism diagnoses and what it’s really like trying to get the right support. They talk about how an autism diagnosis can sometimes feel like a “golden ticket” to services, but also how hard it is to actually navigate the system. The conversation touches on how every kid is different, and why care needs to be tailored, not one-size-fits-all. Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Introduction and Personal Updates 01:41 Understanding Autism as a Gateway Diagnosis 07:22 The Importance of Diagnosis for Accessing Services 11:34 Navigating Therapy and Support for Children 18:39 The Debate on Overprescribing Diagnoses 20:56 Conclusion and Call for Community Input Copyright 2025 Struggle Bus Family All rights reserved.
Episode 9: The Golden Ticket
Jess opens up about her journey as a mom to Avery, who has a rare KDM5C genetic variant. She talks about the challenges of getting a diagnosis, the realities of foster care and adoption, and why early intervention and medical resources matter. She shares both the struggles and the joys of raising a child with special needs, highlighting the role of communication tools and a strong support system in Avery’s development. Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Avery's Journey: From Adoption to Diagnosis 06:19 Navigating Medical Challenges and Care Coordination 11:41 The Impact of Genetic Testing on Treatment 17:24 Reflections on Parenting a Child with KDM5C Copyright 2025 Struggle Bus Family All rights reserved.
Episode 8: Jess’s Journey: Raising Avery with a Rare Genetic Disorder
Since March is Cholesteatoma Awareness Month, Joni shares a deeply personal story about his daughter's ongoing battle with cholesteatoma, a condition that has led to multiple surgeries and significant challenges. He reflects on the importance of celebrating small victories amidst struggles, the emotional toll of medical challenges, and the decisions that lie ahead for his daughter and family as they navigate treatment options. The conversation highlights resilience, the complexities of parenting in the face of health issues, and the hope for future solutions. Episode 7 Full Video: https://youtu.be/cqJ-EGOI3Ec Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c #cholesteatoma Copyright 2025 Struggle Bus Family All rights reserved.
SBF Shorts: Cholesteatoma – Canal Wall Down or Not?
Since March is Cholesteatoma Awareness Month, Joni shares a deeply personal story about his daughter's ongoing battle with cholesteatoma, a condition that has led to multiple surgeries and significant challenges. He reflects on the importance of celebrating small victories amidst struggles, the emotional toll of medical challenges, and the decisions that lie ahead for his daughter and family as they navigate treatment options. The conversation highlights resilience, the complexities of parenting in the face of health issues, and the hope for future solutions. Episode 7 Full Video: https://youtu.be/cqJ-EGOI3Ec Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c #cholesteatoma Copyright 2025 Struggle Bus Family All rights reserved.
SBF Shorts: What Do They Do For Cholesteatoma Surgery?
Since March is Cholesteatoma Awareness Month, Joni shares a deeply personal story about his daughter's ongoing battle with cholesteatoma, a condition that has led to multiple surgeries and significant challenges. He reflects on the importance of celebrating small victories amidst struggles, the emotional toll of medical challenges, and the decisions that lie ahead for his daughter and family as they navigate treatment options. The conversation highlights resilience, the complexities of parenting in the face of health issues, and the hope for future solutions. Episode 7 Full Video: https://youtu.be/cqJ-EGOI3Ec Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c #cholesteatoma Copyright 2025 Struggle Bus Family All rights reserved.
SBF Shorts: The Cholesteatoma Is Back…Again.
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YOUR HOSTS

Joni Chu

Host & Producer

Joni is a dad of five kids with an ultra rare disease and special needs advocate. Joni founded the Struggle Bus Family podcast to build a community for families, parents and caregivers of those with special needs where they could share real, raw and personal stories of common struggles and learn to thrive together.

Jess Daily

Co-Host & Content Guru

Jess is the mother of two boys, one with the same ultra-rare disease as Joni’s children. She brings the unique perspective of an adoptive mom to a child with special needs while navigating single parenthood with a full-time career. Her goal for this community is to help others in similar situations feel heard, valued, and seen.

REVIEWS FROM SUBSCRIBERS

I’m so grateful to be a part of our community!

Thank you again for having me and for sharing your stories.

It’s so validating to listen to!

– Savannah

I was listening to your latest podcast and when, I think Jess, start talking about the trauma of the “first ambulance” or keeping your child safe/alive, the constant level of alert… That really resonated with me. I was actually cleaning up the kitchen and I had to stop, I felt that knot in my throat to suffocate my tears but they started gushing down. Yes, the trauma. Because L is going to be 19 in less than two months, I buried in the depths of my memory a lot of traumatic events. Because we have to face continuous challenges, not only from L himself but also with local authorities (for schooling and funding) and with the NHS, it just never stops. We are on “war footing” all the time and that’s why I can only think in terms of small steps at the time. Not to mention the impact that all of this had on my daughters. We are happy now but to get here was a long and bumpy ride. Thank you for the podcast. I loved it!

– Ilaria

I love the bit about AAC! 

R uses LAMP words for life and is using so much of it for functional communication at school and home. The babbling stage was definitely tough, but he’s like Eugene stringing together sentences – just a little out of order. His is actually in the shop right now getting a full work up. New battery, screen and LCD. Hopefully that’ll last a while

– Lisa

#STRUGGLE #STRIVE #THRIVE TOGETHER.

inquiries@strugglebus.family

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Copyright 2025 Struggle Bus Family All rights reserved.