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

Its been a year lets update

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.

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.

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.

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.

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.