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…
I am 20 years old and I live in Dublin California. I had brain surgery when I was 8 years old at Barrow Institute in Phoenix AZ. I had my hypothalamic hamartoma removed that time. The last seizure I had was on the way to the airport to go to Phoenix for my surgery. I…
Our little Jack was born on April 11, 2014, and came home from Hoboken Hospital with me the next evening to spend his first Saturday night meeting his big sister, Julia, who was almost two. He was perfectly ordinary and had no issues at all guzzling down his bottles and enjoying the attention. However, within…
Mattias is a truly happy 3 ½ year old boy and our only child. He has an infectious smile and a passion for life. Trains, cars and cats are some of the many things that interest him. September 22nd, 2012 Mattias was taken to the emergency room at the Children’s hospital of Philadelphia (CHOP) with…
When I think of my sister, I think of the wonderful, generous, intelligent girl that is my best friend. I think of the softball star, the A/B honor roll student and the avid animal lover. The last thing that comes to mind is her seizures; even though they are part of our family’s daily life,…
