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

So yea what's good without the bad?

Talking about good things happening obviously :) I mean....vacation for a medical family? enjoy our info and our podcast? leave a review please!

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.

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.

In this Episode I will talk about our son being discharged from therapies and what appointments we have coming up

On todays episode we dive into the mental health aspect behind a diagnosis

On this episode we will talk about how we came to find out about Carters two ultra rare diseases and what they are.