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...
Mark and I married 8 years ago, in our mid-thirties, and wanted nothing more than to be parents. Our journey to parenthood took the course of unsuccessful infertility treatments, as well as domestic newborn adoption. Brett was born on Saturday, October 5,...
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...
As we continue through International Hypothalamic Hamartoma Awareness month we are sharing the ‘Why’ of the Hope For HH board members. They were asked to share their reasons for being part of this organization and for generously volunteering their time and...
During our annual board training, each board member was asked to describe their ‘Why’. Why do you support Hope For HH? Why do you volunteer your time? Why is Hope For HH important to you and your family? Why do you feel it is important to be an active...
Meet Lou – A Story of Hope Lou’s story, like many others on this site, begins with a series of misdiagnoses. When he was an infant he was making an odd sound — a repetitive ‘ho-ho’ that wasn’t very laughter-like. Our baby would make noises every 15 minutes,...
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