In this episode, I’m joined by my friend and fellow advocate, Leslie Holleman, who shares her family’s powerful journey to find answers for her son, Chris. What began as uncertainty and questions ultimately led to a diagnosis of GLUT1 deficiency, a rare neurological condition.

Leslie’s story is one of persistence, fierce advocacy, and hope—especially for families who are still searching for clarity and connection.

As always, this conversation reminds us: “It’s not about the years in your life, but the life in your years.”If this episode resonates with you, or you know someone navigating an unexpected journey, I hope you’ll give it a listen and share it.

🔔 Make sure to hit Follow on Spotify so you never miss an episode—and turn on your notifications!

📚 Resources mentioned in this episode:
• Learn more about GLUT1 Deficiency: https://www.g1dfoundation.org/what-is-glut1-deficiency/
• 2026 GLUT1 Scientific & Family Summit: https://www.g1dfoundation.org/2026-summit/

#TogetherThroughIt #RareDiseaseAwareness #GLUT1Deficiency #Advocacy #ParentingJourney #HopeAndResilience #PodcastCommunity

When seven‑year‑old Isabelle became mysteriously ill, her family had no idea how dramatically their lives were about to change. In this episode, Isabelle and her mom, Amanda, share their experience navigating a rare diagnosis of ANCA -associated vasculitis (GPA), sudden kidney failure, and two intense years of pediatric dialysis.

Amanda reflects on the early warning signs, the shock of diagnosis, and the emotional toll of becoming a full‑timecaregiver while learning to live inside a medical world few families ever expect to enter. Isabelle shares her perspective with remarkable insight and humor—talking about missed swim parties, hospital beds that feel like “trash bags,” and the joy of finally returning to school and everyday life.

The conversation explores advocacy, isolation, faith, and the critical role of medical teams and community support. Amanda also speaks candidly about organ donation—both living and deceased—and how one extraordinary donor changed Isabelle’s life forever. This episode is a testament to resilience, the power of connection, and the reminder that even when the journey is long, healing and hope are possible.

Resources:

Vasculitis Foundation https://vasculitisfoundation.org/ Support, education, and connection for individuals and families affected by vasculitis, including pediatric resources and national conferences.

National Kidney Foundation https://www.kidney.org/ Information on kidney disease, dialysis, transplantation, and patient and caregiver support.

Living Organ Donation Information https://www.organdonor.gov/learn/process/living-donation Learn more about becoming a living donor for organs such as a kidney or part of a liver, and how living donation can save lives.

Donate Life Kentucky Trust https://www.donatelifeky.org/ Education and advocacy around organ, eye, and tissue donation, including how to register and talk with your family about your decision.

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#vasculitis #kidneytransplant #organdonor #dialysis

On today's episode, I am joined by a very special guest,my mother, Pepper LaPaglia. Together, we share our family’s unexpected journey with our youngest daughter, what it’s been like to walk through it side by side as mother and daughter, and the invaluable grandparent perspective along the way.

Becoming a grandmother to a granddaughter with special needs took her on an emotional journey she never expected, one that began with confusion and grief and grew into something deeply meaningful. Over time, she learned that her role was not to fix anything, but to offer unconditional love and to show up in every way she could. She found joy in small victories, pride in her granddaughter’s unique way of communicating, and patience she didn’t know she had. Supporting her own child as a parent became just as important as supporting her granddaughter, strengthening the entire family. By learning about the diagnosis and adapting her expectations, she discovered a new sense of purpose. This podcast shares her story of acceptance, growth, and the extraordinary bond between a grandmother and her granddaughter.

Kim shares the story of her daughter who was born with a cleft lip and later in life was diagnosed with a neurodevelopmental condition. With the help of caring doctors, supportive teachers, and other families who walked alongside them, they found their way forward together.

Kim talked about her daughter attending Camp About Face from the ages of 10-18. The summer camp provides children who were born with cleft lip or another craniofacial anomaly the chance to be themselves, make new friendships and build lasting skills that lead to a lifetime of success. Campers participate in challenging, fun and therapeutic recreational activities that are designed to boost confidence and teach self-reliance. For more information, visit https://www.rileychildrens.org/support-services/camp-about-face

Laura and Bob share the story of their youngest son and their family’s journey with autism. With honesty and warmth, they reflect on the challenges, the steady love that carried them, and the support that helped them keep going. Their message is simple and powerful: hope can grow, even in the most unexpected places.

Today, you heard our guests mention several programs for children with disabilities. They vary widely by state, but can help parents and caregivers access services for their children. 

Understanding Early Childhood Supports & Disability Services (U.S.) 

1. Birth‑to‑3 / Early Intervention Program

This program provides services to infants and toddlers with developmental delays or diagnosed conditions. These programs are federally required under the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA), but are run by each state. 

Common services: 

• Developmental evaluations 

• Speech, occupational, and physical therapy 

• Family coaching and support 

• Services provided in natural settings (home, daycare) 

Indiana example: 

• First Steps (Indiana) – Indiana’s Birth‑to‑3 system, serving children from birth until their 3rd birthday. 

How to find your state’s program: 

• CDC Early Intervention directory:  https://www.cdc.gov/act-early/early-intervention/contact-information-by-state.html?CDC_AAref_Val=https://www.cdc.gov/ncbddd/actearly/parents/state-text.html  

• Your state’s health or family services department website 

2. Developmental Preschool (Ages 3–5) 

Once a child turns three, responsibility for services typically shifts from Early Intervention to the public school system under IDEA Part B. 

Schools can provide: 

• Evaluations at no cost to families 

• Individualized Education Programs (IEPs) 

• Developmental preschool or special education services 

• Related therapies during the school day 

Important to know: 

• Eligibility and program structure vary by school district 

• Services are educationally based, not medical 

• Parents do not need a medical diagnosis to request an evaluation 

Where to start: 

• Your local public school district’s special education department 

• State Department of Education special education pages 

 3. Medicaid Waivers 

Medicaid waivers allow states to provide long‑term services and supports to children with disabilities or complex medical needs who might not otherwise qualify for Medicaid based on income alone. 

What services may be covered: 

• In‑home nursing or personal care 

• Therapies (speech, OT, PT, behavioral supports) 

• Medical equipment and supplies 

• Respite care and family supports 

Why they vary by state: 
Each state designs its own waivers, including eligibility rules, covered services, and waitlists. 

State‑by‑state resource: 

• Kids’ Waivers – https://www.kidswaivers.org 
  A national, parent‑friendly site that explains children’s Medicaid waivers and links directly to each state’s programs, eligibility criteria, and application steps. 

In this first episode of Together Through It, I’m joined by my husband, David, to share our family’s own unexpected journey. We open up about our youngest daughter’s autism diagnosis, how it changed the path we thought we were on, and the ways we learned, grew, and found support along the way. If you’ve ever faced a challenge, you didn’t see coming, we hope our story offers comfort, encouragement, and the reminder that you’re not walking this path alone.