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…
Hope for HH is excited to introduce our community’s most recent published author – Sierra Crislip! Sierra’s ebook titled Weird Girl with a Tumor tells her personal journey from a frustrated young girl with a hypothalamic hamartoma (HH) – a condition few knew how to diagnose, to the smart and very insightful young lady she…
We are excited and proud to share that Epilepsia, the Official Journal of the International League Against Epilepsy, today published Dr. Varina L. Boerwinkle’s research findings titled “Subcentimeter Epilepsy Surgery Targets by Resting State Functional Magnetic Resonance Imaging Can Improve Outcomes in Hypothalamic Hamartoma”. To read the full text click here. Thanks to all of Dr. Boerwinkle’s…
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…
Medtronic recently announced they received clearance via the CE (Conformite Europeenne) Mark to launch the Visualase MRI-Guided Laser Ablation System in Europe. This is great news for international HH patients that have been unable to use private pay insurance to cover the cost of the procedure, or have been unable to raise the large amount…
Today is National Nonprofit Day. What kind of person starts a nonprofit anyway? I used to think it had to be someone that was a probably a celebrity, really smart, well connected, had access to a great deal of money and probably had lots of business sense. I had heard of the Bill and Melinda…
Diagnosing and classifying seizures recently became easier and more precise. The International League of Epilepsy (ILAE), the world’s main scientific body devoted to the study of epilepsy, revised its terminology in order to recognize that some seizure types can have different onsets; allow for classification when the onset of the seizure is not observed;…
Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In utero, the doctors noticed she had a small dilation in one of her kidneys but everything else was perfectly normal. She had a normal birth and she had an ultrasound on her kidney to see if anything…