HH patients and caregivers each have their own journey from diagnosis to treatment to living their lives with HH. Read the stories below and be inspired. To share your story, send an email to featuredfamily@hopeforhh.org and we will send you a featured family package.

Meet JoJo

Joseph, we call him JoJo, was born on November 19, 2009. He is our second son. Our family consists of our oldest son Nick (5 years old), my wife, Stacie and me, Joe. We live in Kinnelon, New Jersey, which is about 35 miles outside of New York City.

Meet Zeta

Hypothalamic Hamartoma. That was certainly a diagnosis we weren't expecting. We had never even heard of it, let alone worry about it affecting our new baby.

Meet Landon

Landon came into the world in the most normal of ways. When we looked into our newborn baby's eyes, we had no idea what a brave, strong and caring soul he would become. Landon was born June 14, 2005, weighing in at a perfect 7 pounds, 5 ounces. His Apgar scores were great. We did notice his fontanel (soft spot) was unusually large, but after the pediatrician looked him over, everything checked out OK.

Meet Jordan

Jordan Chere Allen was born on January 15, 2001 to John and Yvella Allen and big brother "Trey". Jordan was the first granddaughter on both sides of the family. She is what we prayed for a baby girl. Jordan like all the other children with HH made this strange noise and we could not figure out what it was. We took her to the doctor and they could not figure what was wrong with her.

Meet Taylor

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, they are outshone by all the other wonderful things about her.

Meet Jadyn

Jadyn was born on September 6, 2007. We counted all her little fingers and toes to make sure she was a typical healthy new born. Things were excellent, the pregnancy very standard with no complication. Jadyn was our first child so we had a lot to learn and until 6 months life was normal for our new family.

Meet Mark

For most 8 year old boys, giggling is an expression of joy! For our son, Mark, episodes of uncontrollable laughter are a rare type of seizure. As a toddler, Mark was quick to smile and laughed often. He seemed happy, but my husband, Craig, and I had a feeling something was amiss. Mark often made swallowing motions and had frequent, but brief moments where he “spaced out.” Our pediatrician diagnosed him with reflux and assured us he was fine. As first time parents, we assumed we were being overly sensitive. However, when Mark’s preschool teacher validated our concerns, we began a series of medical screenings. Test after test came back normal increasing our anxiety that something was being missed and further isolating us from our friends – we could see Mark was “different” from his peers – why wasn’t it obvious to anyone else?

Meet CJ

“Pushy Parents” that is what Edie Magnus the correspondent from Dateline NBC, called my husband and I. It is a title we have come to acknowledge with pride. Edie was interviewing one of the many doctors who believed there were no options left for our four-year-old son CJ. He was born with a rare brain tumor called a Hypothalamic Hamartoma (HH). When CJ was three months old, we learned that the growth deep at the base of his brain was benign. That was our gift from God. No chemotherapy, no radiation, no spreading throughout the body. However, there was bad news. CJ would have a life filled with uncontrollable seizures of multiple types, cognitive decline, precocious puberty, and rage behaviors. As parents, we were devastated. But we also believed, deep in our hearts, that we couldn’t accept that diagnosis without a fight.