On the 18th of September 2023, our beautiful little girl Remy was born. A perfect 3.5kg bundle of love and adored by her big brother from day 1. My midwife checked her APGAR (a test given to newborns soon after birth) and delightfully noted it was a 10. Over the next 4 weeks she was…
We are so happy to announce Laura Egeln has joined Hope for HH Fundraising Committee. Laura’s focus will be Development & Fundraising. If you are interested in fundraising and grant writing and would like to volunteer your time and expertise, please complete this form. A Little About Laura: In early 2002 when my daughter…
In September 2022, we welcomed to the world, our beautiful little girl, Sofia – we were excited but understandably nervous, as my pregnancy hadn’t been smooth sailing. Throughout my pregnancy I had repeat episodes where Sofia would stop moving for long periods of time, causing us to visit the hospital on multiple occasions – each…
Kaelee’s HH Journey Kaelee was born in 2013 as the first of identical twins. The birth was uncomplicated, and she and her sister reached all of their milestones appropriately and she was a happy, bubbly little girl. When she entered school, Kaelee was by all standards above average. She and her sister had a large…
Altered Response Hello! As some of you already may know, my name is Michelle, and my son Jaxon is autistic. Jaxon is considered non-verbal however he does communicate with his AAC (augmentative and alternative communication). Jaxon is considered a high support needs autistic individual. Jaxon has difficulty with safety awareness, eloping, and difficulty determining…
A Family’s Experience with HH and Autism If you are new to the community, my name is Kristy, and I’m the mom of Brett. Brett was diagnosed with a 2.1 x 2.1 x 1.9 cm Hypothalamic Hamartoma at 10 months old on Saturday, August 15th 2020. He began having Infantile Spasms and we rushed…
[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…
[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…
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…
We are so happy to announce Aimee Deroin has joined Hope for HH Information Committee. Aimee’s focus will be working with individuals and families in our Hope for HH community to share their HH Journey. If you are interested in sharing your story please complete this form. A Little About Aimee: From a very…
A Tribute to Joshua Potts from his mom Hello, my name is Jill. I would like to tell you about my guardian angel, my son, Joshua. He is forever in my heart. Josh was a very courageous, affectionate, and loving child. There was this special sweetness that surrounded him. Josh was one of those people that…
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…
