Update on JoJo

Update on JoJo

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%. ...
Meet Aiden

Meet Aiden

As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would...
Comorbidities and HH

Comorbidities and HH

So just what is a comorbidity and why is it important to an individual with a hypothalamic hamartoma (HH)? In medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen more frequently with, a separate primary medical condition. In the case...
Meet Calebe

Meet Calebe

[see translation here] Hello HH community, my name is Calebe, I am 9 years old.  I'm from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH). I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I...
Meet Amanda

Meet Amanda

“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through....