About 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.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
The host provides updates on surgeries and new therapies related to two rare diseases, reflecting on the past year.
28 Aug 2024
All the bad things rolled in one episode for my 10th episode!
So yea what's good without the bad?
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
27 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!
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
30 Jun 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.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
27 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 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.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
3 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
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
26 May 2024
A Little Life Update
In this episode we will give a little life update. Stay tuned for some news!
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
17 May 2024
Mental health along with diagnosis
On todays episode we dive into the mental health aspect behind a diagnosis
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
13 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.
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
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
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
12 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 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 (https://acast.com/privacy) for more information.
Podcast Authority Score: 1 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
2
Social presence
0
YouTube
0
Engagement
0
Contact Double Rare: A Mother's Path With Two Rare Diseases
Guest appearances
Does not typically book guests
Based on episode analysis; this does not confirm that the show is currently accepting guests.
Host of Double Rare: A Mother's Path With Two Rare Diseases?
Claim your podcast to manage its listing and keep your show details accurate.
Pod Engine is an independent podcast discovery and analytics service and is not affiliated with or endorsed by this podcast. Artwork and show content belong to their owners. Full legal notice.
Explore this show Podcast research with Pod Engine
