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Double Rare: A Mother's Path With Two Rare Diseases
Double Rare: A Mother's Path With Two Rare Diseases episodes
- Its been a year lets updateI 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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31 min - All the bad things rolled in one episode for my 10th episode!So yea what's good without the bad?
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19 min - We get to go to Disney?? what??
Talking about good things happening obviously :) I mean....vacation for a medical family?
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16 min - We drove 5 hours to see a Nuero Genetic Dr to discuss UBTFOn 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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29 min - 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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30 min - Sick Policies and what's coming upIn this Episode I will talk about our son being discharged from therapies and what appointments we have coming up
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40 min - A Little Life UpdateIn this episode we will give a little life update. Stay tuned for some news!
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29 min - Mental health along with diagnosisOn todays episode we dive into the mental health aspect behind a diagnosis
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34 min - Genetic TestingOn 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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28 min - Unexpected 6 month checkupOn this episode we dive into what happened to start us on this medical journey. Triggers : medical procedures, CPS, Emotions, Blood
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30 min
About Double Rare: A Mother's Path With Two Rare Diseases
From the publisher's feed
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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