Saving Joelle

Saving Joelle

Joelle Rue was born in April of 1994. During Joelle’s 4 month well baby check-up her doctor told me to go to the hospital for an ultrasound of her head. There it was discovered that she had a large cyst and a tumor-like structure in the center of her brain.  She...
Meet Max

Meet Max

Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I had a wonderful pregnancy, and his delivery was without any complications. His big brother, Jack, dad, and I could not wait to meet the little man that was going to complete...
Meet Francesco

Meet Francesco

Appreciate the little moments in life. That’s what my almost three-year-old son has taught me. Francesco was born, full-term and completely healthy boy, on December 27, 2016. He came into a world that loved and cherished him; a support system of three beautiful step...
Meet David

Meet David

If you met David or indeed if you saw David perform you would be surprised to learn that David had a hypothalamic hamartoma (HH), had surgery in the Barrow in Phoenix at age 12 and had huge challenges along his journey to success. David’s HH presented itself to us...
Why Do The Comorbidity Survey?

Why Do The Comorbidity Survey?

We are only a week into the HH Comorbidity Survey and the participation has been amazing! We hope to have at least 200 participants by the end of July and it looks like we can certainly make that number and perhaps more! A huge thank you to all who have already...