Heart of a Volunteer
“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis
My Daughter Elleanor was diagnosed with HH (hypothalamic hamartoma) when she was 2 (2014) after previously being diagnosed with reflux. She underwent her first laser ablation in Houston, Texas in January of 2016. Dr. Curry at Texas Children’s Hospital was able to remove a portion of the tumor, but not as much as he intended. The seizures came back pretty quickly, and remained consistent in quantity. A few months later it was evident she needed to get back to Houston for another round of the laser ablation. The surgery took place in Dec 2016, and since then, she has had a few minor seizures, but more or less has been seizure free. She now enjoys more confidence in social situations, is active in dance and tumbling, and is very good at making friends. We couldn’t be more pleased with where she is currently at.
My wife and I discovered Hope for HH fairly early in our journey. It was reassuring to know that there are others out there in similar situations, and to know that we have access to people who have gone through everything that we were going through. I decided to volunteer for Hope for HH because it is the least I could do to give back to other families who are just at the beginning of their diagnosis.
My family and I live in Salt Lake City, Utah. My wife Jenessa and I have 3 kids; Elle (6), Peter (4), and Charlie (1). We enjoy snow skiing, the mountains, and sporting activities.
Interested in Joining Our Team?
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interest.