A Fight for Medical Freedom (Hosted by "Under the Sun" Podcast)

Blog Post: Thank You for Sharing Our Story - Samuel’s Fight for Medical Freedom

We are so incredibly grateful to the hosts, Aileeah & Irene, for providing us with the platform to share our journey on their podcast. It has been an emotional, difficult, and sometimes lonely road, and this episode has been a chance to bring light to the challenges we face in Samuel's fight for health and medical freedom. From the very first conversation to the heartfelt discussions that followed, the hosts not only gave us a voice but also helped amplify our message to a wider audience. In return, I wanted to offer this spot on my blog to host some additional content to go along with the podcast episode, for those momma's who want more details!

As a mother, there is nothing more important than protecting your child, and for the last several years, I’ve fought not only for Samuel’s physical health but also for his right to make informed medical choices, and for my right to make them for him. We know this story is not unique—many other families face similar battles, navigating hospital systems, battling policies that seem to contradict their values, and standing firm in what they believe is best for their children. It’s empowering to know that we’re not alone.

In this podcast episode, I share Samuel’s ongoing health journey and the many hurdles we’ve  encountered, including the pressure to meet medical requirements that go against our principles. The hosts were compassionate listeners, and I am thankful that they took the time to understand our story and help spread the word. Their support means the world to us.

This podcast episode isn’t just about Samuel’s journey—it's about every parent, every family who has ever felt forced into a corner, questioning medical procedures or policies that don't feel right for their child. It's about creating awareness, fostering a sense of solidarity, and sparking important conversations about medical freedom that will hopefully lead to systematic changes in our medical care system.

Thank you to the hosts, once again, for hearing our story and for sharing it with their audience. We hope that by sharing our story, others can find strength in their own medical decisions, knowing they are not alone.

Episode Highlights & Timestamps

In this deeply personal podcast episode, I open up about Samuel's health journey, the challenges we’ve faced, and our fight for medical freedom. Below, you’ll find a breakdown of the key topics discussed and where to find them in the episode. If you want to jump straight to a specific part, I’ve included the timestamps and the host’s questions to guide you through our conversation.

Host’s Question: "Can you share a bit about your background and why you decided to speak out about this?"
0:00 – Introduction to Our Story:
I start by introducing myself, Samuel, and our family's experience navigating his health struggles. It’s a journey that’s both heartbreaking and filled with determination.

Host’s Question: "What was it like when you first started to understand the severity of Samuel’s health issues?"
7:30 – Samuel’s Diagnosis and Early Health Struggles:
I talk about how Samuel’s health began to deteriorate and the emotional impact it had on our family. From the initial diagnoses to the realization that Samuel would need a kidney transplant, it’s a pivotal moment in our story.

Host’s Question: "Can you explain what happened with the vaccine requirements, and how did it impact your decision-making?"
25:30 – WIC Vaccine Mandate Issues:
This part of the conversation dives into the WIC vaccine mandate issue, where I explain the challenges we faced as parents when it came to mandatory vaccinations for Samuel. I also touch on our beliefs about vaccinations and why we felt it was important to make our own decisions about Samuel’s care.

Host’s Question: "How did you handle the pushback from the medical system when you tried to make decisions that were in line with your beliefs?"
33:00 – The Heart-Wrenching Reality of Fighting the System:
I discuss the emotional toll that comes with fighting for what we believe is right for Samuel. This section reveals how we felt up against a healthcare system that didn’t always have our son’s best interests at heart and how difficult it was to advocate for him.

Host’s Question: "What challenges have you faced when it comes to the hospital system and how has it impacted Samuel’s care?"
45:30 – The Struggles of the Hospital System:
I get into some of the specific hurdles we’ve faced within the hospital system itself. From doctors who don’t always understand our perspective to policies that don’t align with our values, it’s been a fight every step of the way.

Host’s Question: "What’s the next step for Samuel in his health journey, and how are you preparing for the transplant?"
57:00 – Looking Ahead to the Transplant:
Here, I talk about where we stand with Samuel’s kidney transplant and the emotions surrounding this major decision. It’s a critical time for us, and we are working hard to ensure Samuel is treated with the care he deserves.

Host’s Question: "How can people support you during this time, and how can they follow along with Samuel’s journey?"
1:02:00 – Wrapping Up & How You Can Help:
I end the conversation by expressing gratitude to those who have been supporting us. I share how people can follow Samuel’s journey, offer their prayers, and help spread awareness of the medical freedom issues we’re facing.

WATCH the FULL EPISODE HERE 

Brief Timeline of Samuel's Health Journey

Here’s a visual timeline to help you follow Samuel’s journey through this fight for medical freedom, along with the critical moments that have shaped our path forward.

• 2014 Samuel’s age: 6
  March: Samuel’s family encountered vaccine requirement with the WIC (Women, Infants, and Children) requirements, which affected their ability to access necessary groceries.

  Aug/Sept: Samuel’s health issues began to surface. Diagnosed with Nephrotic Syndrome and then FSGS (post biopsy) and maintained intense ongoing care and procedures over 3 years to "manage" and "slow down the progression of the disease" with "no cause, no cure".

• October 2017
  Event: Cook Children's Hospital (Fort Worth, TX) ; Dialysis began, Medical Bullying, Forced out to find new Nephrologist; got on waitlist for Children's Medical Center (Dallas, TX)

• 2019
  Event: Samuel’s kidney disease continued to progress, and he began to require more specialized care, including applying for a kidney transplant.
  Event: Samuel was faced with a decision regarding vaccines in relation to his transplant process. Doctors required that he receive all CDC vaccines to become eligible for a transplant. This led to a significant conflict with the family, as they believed the vaccines could harm Samuel's health, especially given his kidney disease.

• 2021 Mom approved as Samuel's Living Kidney Donor, Medical City cancelled process due to Samuel's "non-compliance" (not verbally agreeing to the procedure)
• 2022 Mom tried to get Kidney transplant at OKC Children's Hospital. Conflict with Nephrologist & Transplant Team over COVID vax requirements as well as Nephrologist's requirement to move locally (even though the drive was 2.5 hours away for monthly appointments).
• 2022 July Samuel was very sick with new severe UlcerColitis Symptoms and hospitalized for weeks at Children's Medical Center. Mom was told again they would not receive him as a nephrology patient unless he came in through their transplant center. However, mom could not get an application for transplant without showing proof of the COVID vaccine. Another roadblock. 

• 2023
  Event: Samuel’s family is continuing to navigate challenges surrounding the mandatory vaccination requirements for a kidney transplant. They are exploring options to possibly challenge these policies, advocating for medical freedom, and raising awareness about the potential risks these vaccines pose to children with chronic conditions like Samuel. The transplant process is still pending as of the latest discussions.

Once again, thank you for your time, your prayers, and your continued support.

We are grateful to each and every one of you who has walked this path with us, whether you’ve been following from the beginning or just tuning in now.

Stay tuned for more updates, and thank you for sharing in Samuel’s fight for health and freedom.

We hope this story inspires others to not only support us, but to help others be encouraged to speak up and take control of their medical decisions.

Stay strong, stay informed, and never stop advocating for what’s best for your family.

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Categories/Topics: Medical Freedom Parental Advocacy Organ Transplant Requirements Vaccination Dilemmas Personal Stories of Health Struggles Health Policy and Systemic Challenges