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

Its been a year lets update

30 min · 30. juni 2025
episode Its been a year lets update cover

Description

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 [https://acast.com/privacy] for more information.

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11 episodes

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