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

I am live with my fb and I am doing updates from surgeries to new therapy and we got to go to Boston Hosted on Acast. See acast.com/privacy for more information.

So yea what's good without the bad? Hosted on Acast. See acast.com/privacy for more information.

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 for more information.

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 for more information.

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 for more information.

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 for more information.

In this episode we will give a little life update. Stay tuned for some news! Hosted on Acast. See acast.com/privacy for more information.

On todays episode we dive into the mental health aspect behind a diagnosis Hosted on Acast. See acast.com/privacy for more information.

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 for more information.

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 for more information.

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.