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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…
Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was healthy and we were able to take her home and try our hand at this parenting thing. She was growing normally, but would make this weird grunting sound. At two months old I showed her pediatrician a video…
HH is for life. In 1957 my wife was born, it was a normal birth but within weeks it was clear all was not right with Little Elizabeth. Doctors in those days had no idea how to diagnose complicated conditions in babies. As Elizabeth grew Epilepsy was confirmed but no treatments made any difference and…
Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound revealed that Carson had a very large cyst in his brain. Further follow up suggested that it was coming from the hypothalamus region. We delivered normally at 39 weeks, further testing couldn’t confirm anything else, so it was decided…
I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of 43 with a 2.5 cm Hypothalamic Hamartoma, and 2 other very rare brain conditions (Unilateral Polymicrogyria and Unilateral Schizenchephaly). About 2 months after being diagnosed, I decided since I could not work…
Kaitlyn’s HH Journey We brought our perfect beautiful daughter home two days after she was born. Soon we realized that we had a fussy baby who wouldn’t sleep unless we held her and was sometimes inconsolable. When I took Kaitlyn to the pediatrician for her two-week check-up, I was told that she had colic. Soon…
Mason’s Story It was a Tuesday, September 22nd 2015. Mason was about 19 months old and we had run into the grocery store to pick up a few items. He was babbling away, sitting right in front of me. Next thing I knew he was no longer babbling, no longer clapping, no longer moving; instead…
Gavin’s Story Gavin was born on time and had a normal delivery. From the time he was about two weeks old we noticed him doing a sort of grunting mixed with squinting his eyes, like he was in pain. We noticed it happening quite frequently so we brought it up to his pediatrician at his…
Faith’s Story My pregnancy with Faith was difficult, I developed a strange rash, which we never really got to the bottom of. Due to the rash I had an ultrasound at 32wks to check the size of the baby. It was during this scan that the radiologist noticed there was something not right. This was…
Carrie’s Journey We are excited to introduce Carrie – an adult with HH and the Director of our Hope for HH UK Affiliate! Four years ago was pretty much the worse experience of my life. I was hoping to have a temporal lobectomy to stop my daily seizures, after believing for 30 years that my…
Jacob’s Journey Jacob was born April 11, 1998. He was such a cute bundle of golden hair. We took him home and he would make these funny noises, especially when he was sleeping. It sounded like laughter but we just thought he was a strange little one. Fast forward a couple of years when he…
I’m from County Clare in Ireland and I am 19 years old. I was born with a hypothalamic hamartoma. I got it removed in the Barrow Institute when I was 11 years old. My tumour wasn’t diagnosed until I was 3 or 4 years old. It was so rare that it was hard to find…