Double Rare: A Mother's Path With Two Rare Diseases
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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Health & Fitness
Mental Health
Education
Motherhood
Kids & Family
Parenting
Empowerment
Community
Hope
- Update frequency
- every 6 days
- Average duration
- 27 minutes
- Episodes
- 11
- Years Active
- 2024 - 2025
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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00:30:22 |
Mon 30 Jun 2025
All the bad things rolled in one episode for my 10th episode!
So yea what's good without the bad?
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00:18:42 |
Wed 28 Aug 2024
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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00:15:45 |
Tue 27 Aug 2024
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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00:28:42 |
Sun 30 Jun 2024
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 m…
00:29:30 |
Thu 27 Jun 2024
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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00:39:53 |
Mon 03 Jun 2024
A Little Life Update
In this episode we will give a little life update. Stay tuned for some news!
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00:28:17 |
Sun 26 May 2024
Mental health along with diagnosis
On todays episode we dive into the mental health aspect behind a diagnosis
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00:33:35 |
Fri 17 May 2024
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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00:27:07 |
Mon 13 May 2024
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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00:29:19 |
Mon 13 May 2024
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 r…
00:24:38 |
Sun 12 May 2024
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