Barrow Hypothalamic Hamartoma Patient Stories

Connor

Joshua

Since birth Joshua had this little "thing" he would do. Sometimes it sounded like a laugh, sometimes it sounded like a cry. People would actually ask us, "What is he doing, is he laughing or crying?" We always replied, "we don't know, if he is smiling . . . then we guess it's a laugh." . . . more

Chris

"It was a strange giggle, like a laugh that comes from the depths of his bowels," says his mother, Dawn. "We just thought it was great formula." When Christopher turned two, the giggling spells took a more ominous turn. . . . more

Gabriel

Gabriel was born the second of twins, they were born 6 weeks prematurely.  Gabriel exhibited very pronounced "fits of rage" from the minute he arrived, whereas his twin sister was very calm and laid back.  Gabriel was, for the most part, very agitated. . . . more

Megan

Over the course of the first seventeen and a half years of my life I was never normal, but no doctor or psychologist could quite figure out exactly what was wrong with me until a life-changing surgery that I will never forget. . . . more

Lindsey

At age three we realized that the ten second laughing spells Lindsey had were seizures, as they started to make her lose continence and do funny things. She was a problem child and could not tolerate any frustration at any time. . . .  more

Mikayla

Sarah and Trevor first noticed Mikayla's strange behavior shortly after she was born. The infant would seem to startle, her eyes glazed and a crooked grin on her face. . . . more

Shea

Shea is 28 years old. He had gelastic seizures from birth, but no one recognized them as seizures. In the beginning, he cried non-stop and was diagnosed with Hirshsprungs at a few months of age. . . .  more

Domenico

In these days of daily stress and world unrest, good news shines through as a bright beacon, especially when that good news happens to good people and it serves to renew our faith even when bad times never seem to end. . . . more