Debbie’s HH Journey My name is Debbie Menzies, I’m 60 years old, and I survived an undiagnosed Hypothalamic Hamartoma for 55 years. Born Deborah A. LeBorgne, the youngest of six children, I was raised in Westbrook, Maine. My youngest memories are as a 5-year-old, very happy, well-adjusted, and outgoing little girl. Cruelly, those memories soon…
Adelaide’s HH Journey Adelaide was born on November 23, 2018 as the youngest sibling to her two sisters and brother. She met all of her milestones however she was very hard to settle, didn’t sleep very well (even for a baby) and cried quite a bit. For the first 18 months of her life she…
We are so happy to announce Laurel Gallant has joined Hope for HH as a volunteer on the Hope for Hypothalamic Hamartoma Information committee. A Little About Laurel: In the medical world, your life can change in an instant. I want to help other Hope for Hypothalamic Hamartomas clients the way our family was…
We are excited to announce Eric Traub will be joining Hope for HH as a volunteer on the Hope for Hypothalamic Hamartoma Finance and Operations committees. A Little About Eric: I am a finance executive, husband, and father of two daughters, Alanna and Lily. Alanna was diagnosed at age 7 in 2020 after a series…
A Tribute to Cassie Skinner from a friend and fellow adult with HH, Carrie Fulcher Cassie and I connected around 8 years ago. When she came into my life, I remember feeling like we had so much in common. Not only because we were both adult’s with Hypothalamic Hamartoma Syndrome (HH), but she also had…
Monica’s HH Journey Monica was our second daughter, born full term on October 2, 2011. We were so excited to have 2 little girls to love! Our first daughter was a content baby and we didn’t expect anything different with our second daughter. But it wasn’t long until we realized something was bothering her. Some…
Logan’s HH Journey Logan was born on August 11th 2014 coming into the world at 7.3 lbs and laughing to the surprise of not only us but the doctors and nurses at delivery. We all thought this was very cute especially hearing of the death of Robin Williams that very same day, so we called…
A Hypothalamic Hamartoma Journey of Discovery The Beginning of Knowledge – Finding the Hypothalamic Hamartoma I entered the world as a work in progress after only 32 weeks. Several personal anatomical anomalies, including extra digits, required correction then and throughout the following years. I reached developmental milestones in my own time but eventually caught…
My partner Martin and I had difficulty getting pregnant; we opted to have IVF. My pregnancy was normal besides having to watch my blood pressure. In week 18 I was diagnosed with placenta praevia marginalis. However, this didn’t cause any further problems. I gave birth to my beautiful, wise boy on the 31st of July…
Becoming an Advocate Let’s start by defining an advocate. An advocate is someone who raises awareness, pushes for change, and makes facts known for those who are not fully being heard. When your loved one is diagnosed with autism, it is essential that you advocate for them to help their voices be heard. In…
Coming to terms with a Rare Disease diagnosis and Autism When you find out that your family is going to be growing by two more hands and two more feet, you start daydreaming about all of the “perfect” memories, right? You start to think about all the peaceful nights, the cuddles, endless love, and…
Parenting from Different Points of View When your child gets diagnosed with both an ultra-rare syndrome and autism, many mixed emotions are bound to arise between you and your child’s loved ones. I want to bring your attention to this because I feel as though it’s not talked about enough. When my son was…
