Double Rare: A Mother's Path With Two Rare Diseases

Its been a year lets update

Mon, 30 Jun 2025 23:45:19 GMT

I am live with my fb and I am doing updates from surgeries to new therapy and we got to go to Boston

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All the bad things rolled in one episode for my 10th episode!

Wed, 28 Aug 2024 00:10:41 GMT

So yea what's good without the bad?

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We get to go to Disney?? what??

Tue, 27 Aug 2024 23:38:06 GMT

Talking about good things happening obviously :) I mean....vacation for a medical family?

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We drove 5 hours to see a Nuero Genetic Dr to discuss UBTF

Sun, 30 Jun 2024 18:52:32 GMT

On this episode i discuss what happened during my trip to Winston Salem as well as Carters MRI experience. Carter got to see the pulmonologist and an allergist.

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DC Leukodystrophy Research Trip Update(UBTF)

Thu, 27 Jun 2024 18:59:37 GMT

During our trip to Washington, DC for medical research related to my son's Leukodystrophy gene mutation (UBTF), we stayed at the Ronald McDonald House for accommodations. In addition to focusing on medical appointments and research, we took the opportunity to visit family members, including his grandparents (nono and yaya) and aunt. We also enjoyed attending a lively Greek festival together, immersing ourselves in the cultural experience. The trip was rounded off with a pleasant brunch shared with our relatives, combining both the pursuit of medical insights and cherished family moments in our nation's capital.

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Sick Policies and what's coming up

Mon, 03 Jun 2024 20:23:46 GMT

In this Episode I will talk about our son being discharged from therapies and what appointments we have coming up

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A Little Life Update

Sun, 26 May 2024 13:10:57 GMT

In this episode we will give a little life update. Stay tuned for some news!

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Mental health along with diagnosis

Fri, 17 May 2024 18:35:55 GMT

On todays episode we dive into the mental health aspect behind a diagnosis

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Genetic Testing

Mon, 13 May 2024 02:48:39 GMT

On this episode we will talk about how we came to find out about Carters two ultra rare diseases and what they are.

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Unexpected 6 month checkup

Mon, 13 May 2024 01:55:50 GMT

On this episode we dive into what happened to start us on this medical journey. Triggers : medical procedures, CPS, Emotions, Blood

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Introduction

Sun, 12 May 2024 18:28:39 GMT

Welcome to Double Rare, where we delve into the extraordinary journey of a family facing the unimaginable. I'm Katie, and in this inaugural episode, we'll embark on a deeply personal exploration of resilience, hope, and the bonds that unite us in the face of adversity. Join me as I share the remarkable story of my son's battle with not one, but two ultra-rare diseases, intertwined with my own journey navigating a rare condition. Together, we'll unravel the threads of our shared experiences, shedding light on the challenges, triumphs, and the profound lessons learned along the way. This is more than a podcast; it's a testament to the power of love, courage, and the unwavering spirit to defy the odds. This is our story, and I invite you to join us on this extraordinary journey."

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