We are Mark and Kristy, first time mom and dad to Brett, age 18 months. We are relatively new on our HH journey, as Brett was diagnosed at 10 months. From the day of our diagnosis, Hope for HH has been our lifeline for support and information. We are so thankful to have found such…
As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share my story of ‘Why’ I was driven to join the organization and help others in the Hope For HH Community. ‘This is My Why’ I was 35 weeks pregnant with a healthy baby boy when my husband and I…
My name is Cindy Rubash and I am a volunteer with Hope for HH. I was asked to explain why I have chosen to be a volunteer (besides the fact that I am retired and have way too much time on my hands). Well, I have a grandson with HH. Our family has a history…
I’m a full-time nurse, wife, and a mother of two children…Reece who’s 10 and Nora, who’s 7. Reece was diagnosed at age 5 after his seemingly innocent spells of laughter began to be followed by bouts of staring, confusion, and sleepiness. After a year of failed treatment with medication, he had a laser ablation at…
Hope for HH would like to introduce and send a warm welcome to the newest member of our team – Afsoon Movahed! Afsoon is joining us as an Intern and will be working on a wide variety of projects. One of those projects will be blogs. She will be interviewing some our families and individuals…
The 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 Greetings HH community! I wanted to take a moment and provide you some of my background. I was born, raised in…
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…
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 goal in volunteering for Hope for HH is very personal. My son Christopher was officially diagnosed with HH (hypothalamic hamartoma) at…
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 Hello, my name is Diane West. I live in Clovis, CA. I retired from my position as a systems and statistical analyst…
The 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 son, Jack, was diagnosed at 15 months after a year of misdiagnosis. He underwent laser ablation surgery just before his…
The 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 son, Eli, was diagnosed at age 3.5 with Hypothalamic Hamartoma. While trying to navigate all that goes with HH I…
