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

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

28 min · 30. juni 2024
episode We drove 5 hours to see a Nuero Genetic Dr to discuss UBTF cover

Description

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.

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episode DC Leukodystrophy Research Trip Update(UBTF) artwork

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.

27. juni 202429 min