Alexis - POSSIBLE ROHHAD

Alexis is new to our family. Her doctors haven't officially diagnosed her with ROHHAD as they are still trying to figure it all out and learn about it. But they are pretty certain that she does in fact have it. I put a chronological order of photos of for Alexis so you can see her change. The above photo is at 12 months.

This is Alexis at 2 years old.


This is Alexis at 3 years old. You can see the transformation between age 2 and 3.

Miss Alexis at age 4. She started seeing many doctors and having many scans done. They are slowly trying to piece the puzzle together. Alexis lives in Nebraska and has traveled to Mayo a few times a year and seen doctors there that also believe she has ROHHAD.

This is what Alexis' room has become.

Alexis turned 7 years old on March 18th. She now wears her mask to sleep and is constant work ups with her doctors. Alexis will have a tough road ahead as the doctors sort through her complex ROHHAD symptoms and work with her tumor at the brain stem.

I have only recently met her mother through our Facebook ROHHAD site. We talk almost every day and try to compare notes. There is a lot to learn when you are first diagnosed with ROHHAD and then once you learn about it you realize there isn't enough information. We're happy to welcome Alexis to our family but sad we had to meet her this way. We love all of you.