Every Story Matters – Sharing your HH story can increase understanding and awareness.

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.

Meet Ruslan

Meet Ruslan (Russian)

[see English translation]   Путешествие Руслана До 38 недели моя беременность протекала нормально. У меня было не только высокое давление, но и отеки. Однако гинеколог спокойно отреагировала на эту проблему со словами “для беременной женщины это нормальное давление”. К сожалению, все пошло не по плану. Из-за высокого кровяного давления на 39 неделе беременности у меня…

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Meet Ruslan

Meet Ruslan (English)

[see Russian translation] My pregnancy was normal until 38 weeks. I had not only high blood pressure but also swelling. However, gynecologist reacted calmly to this problem with the words “for the pregnant woman that is normal blood pressure “. Unfortunately, everything worked in the wrong way. The high blood pressure at 39 weeks pregnancy…

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Meet Monica

Meet Monica – An Update on her HH Journey

Update on Monica’s HH Journey We would like to provide an update of Monica’s story since first sharing her story in December 2022. Monica was slowly weaned off her medication, seizure free and doing very well. About 3 weeks after she was completely off medications, I went into her room to wake her, which caused…

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Meet Debbie

Meet Debbie

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…

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Meet Adelaide

Meet Adelaide

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…

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Meet Monica

Meet Monica

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…

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Meet Logan

Meet Logan

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…

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Meet Adam

Meet Adam

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…

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Meet Clemens

Meet Clemens

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…

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Meet Jaxon

Meet Jaxon

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…

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Meet Brett

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…

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Meet Lou

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…

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