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…

My husband and I found out that we were pregnant with a baby boy and were ecstatic! There were no complications in my pregnancy besides that our baby boy Jaxon was frank breech, so we had an ultrasound at 35 weeks pregnant to determine if I could deliver naturally or would need a c-section. At…

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, 2019, however, we didn’t meet him until 5 days later in the hospital…

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, waking himself up and because of this…

Madeleine was born on September 5th, 2004. Everything appeared normal until some unusual symptoms at 6 months old. Her diagnosis from Great Ormond Street was quick, she had a Hypothalamic Hamartoma (HH), a rare type of brain tumor. We were constantly watching for seizures, common with this diagnosis, but thankfully they never appeared. On the…

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 our family. Max was born a…

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 siblings, two loving parents, two clever dogs, and extended family and…

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 when he was 9 years old…

Meu nome é Renato e moro no Brasil com minha esposa e 2 filhos. Estou aqui para falar sobre meu filho mais velho, Guilherme. Nasceu em 2011. Junto com o HH, Guilherme também nasceu com polidactilia de ambas as mãos e de ambos os pés. Por muitas razões, digo que ele é realmente único. Levou…

[see translation here] My name is Renato and I live in Brazil with my wife and 2 kids. I am here to tell you about my oldest son, Guilherme. He was born in 2011. Along with the hypothalamic hamartoma (HH), Guilherme also was born with polydactyly of both hands and both feet. For many reasons,…

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%.  JoJo used to have 100 gelastic seizures a…

As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would…

Hola comunidad de HH, mi nombre es Calebe, tengo 9 años. Soy de João Pessoa, Paraíba, Brasil. Tengo un hamartoma hipotalámico extraño (HH). Me diagnosticaron hamartoma hipotalámico (HH) en 2018. Sin embargo, desde mis primeros años de vida sufrí los síntomas de esta enfermedad. Siempre he tenido convulsiones, pero me llevó tiempo determinar la causa de estas…

[see translation here] Hello HH community, my name is Calebe, I am 9 years old.  I’m from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH). I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I suffered from the symptoms of this disease. I have always…

“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through. Throughout my treatment I can…

Olá, meu nome é Luis Paulo e eu sou o pai da pequena Sofia. Estou escrevendo este blog no Hope For HH e compartilho um pouco da história de HH da Sofia. Espero que isso ajude a divulgar informações sobre hamartomas hipotalâmicos e a organização e site Hope For HH. Sofia sofria de ataques de…

[see translation here] Hello, my name is Luis Paulo and I’m the father of the little Sofia. I’m writing this blog on Hope For HH share a little of Sofia’s HH story. I’m hoping this will help spread information about hypothalamic hamartomas and the Hope For HH organization and website. Sofia suffered from bouts of…