The process of sharing this often difficult journey can be healing for both you and others in our community. If you’re interested, please complete this form and we’ll start the process.
[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…
When Kate was born in August of 2014, in Fargo, ND, the nurses immediately commented on how ‘vocal’ she was. We were a sleepless family, as she would always wake in the night, making her ‘crying noise.’ She often had episodes throughout the week, where it would last the entire night. I can recall her…
Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on the 22nd July 2004 in Brisbane, Queensland, Australia. My pregnancy was not complicated, I did have gestational diabetes, but a mild form that was controlled by diet. Charlotte, or Charli to her family, did however show signs of an enlarged…
Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date in the biggest snow storm that year. We joke that she has been doing things her own way since before she was born. She is very spunky, strong willed and quite the negotiator. She is truly one…
Josh and I found out we were pregnant with Anniston on our one year engagement anniversary (about 2 months before we got married) – the pregnancy was unplanned but we were both excited and felt blessed to have been able to conceive so quickly. During my pregnancy I had a subchronic hemorrhage in the beginning…