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

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Katie Canning

11 episodes

4 months ago

Join us on a deeply moving journey as we delve into the remarkable story of a mother's unwavering love for her son, who battles not one, but two rare diseases. Through candid conversations and heartfelt moments, listeners will gain insight into the challenges, triumphs, and resilience of a family navigating the complexities of rare medical conditions. From the initial shock of diagnosis to the daily realities of caregiving, this podcast explores the profound bond between a mother and her child, demonstrating the power of love and determination in the face of adversity. Tune in to be inspired by the courage, strength, and unwavering hope of this extraordinary duo as they navigate life's unexpected twists and turns together.

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All content for Double Rare: A Mother's Path With Two Rare Diseases is the property of Katie Canning and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Hosted on Acast. See acast.com/privacy for more information.

Episodes (11/11)

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

Its been a year lets update

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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4 months ago

30 minutes 22 seconds

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

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

So yea what's good without the bad?

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1 year ago

18 minutes 42 seconds

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

We get to go to Disney?? what??

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

enjoy our info and our podcast? leave a review please!

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1 year ago

15 minutes 45 seconds

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

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

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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1 year ago

28 minutes 42 seconds

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

DC Leukodystrophy Research Trip Update(UBTF)

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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1 year ago

29 minutes 30 seconds

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

Sick Policies and what's coming up

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

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1 year ago

39 minutes 53 seconds

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

A Little Life Update

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

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1 year ago

28 minutes 17 seconds

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

Mental health along with diagnosis

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

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1 year ago

33 minutes 35 seconds

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

Genetic Testing

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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1 year ago

27 minutes 7 seconds

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

Unexpected 6 month checkup

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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1 year ago

29 minutes 19 seconds

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

Introduction

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."

Hosted on Acast. See acast.com/privacy for more information.

1 year ago

24 minutes 38 seconds