After nearly 8 years of a courageous battle with a hypothalamic hamartoma, Grace passed away unexpectedly on December 11, 2011. Grace brought joy to the lives of those who loved her with her gentle smile and loving personality. Gracie loved going to school, making jewelry, doing puzzles and taking care of her baby dolls. She…
Jake was diagnosed with HH when he was 4 years old. In spite of his seizures, he was a very happy young man. He loved to watch movies and he had acquired quite a collection of his own. He especially enjoyed his “movie nights” with his favorite Aunt! He also enjoyed drawing and coloring, as…
“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…
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…
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…
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…
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…
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. On the day that the prenatal ultrasound showed our third child would be a girl we also found out that there may be some health concerns. The ultrasound showed…
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. When JoJo was born, our family…
Grace Katherine Webster (2003 – 2011) Perry and I had married in early 2002 with the hopes of beginning our family immediately. Unfortunately, we experienced two back to back miscarriages in 2002 and we felt the dreams of a family were slipping away from us. We decided to seek the help of a fertility specialist…
Gabriel was born by cesarean second, the second of twins. His sister, Isabella, arrived a minute earlier than him. During the pregnancy, it was noticed that she moved a lot more than he did but everyone chalked it up to the fact that “it must just be kind of crowded in there with the two…
I was born 30 years ago with my umbilical cord rolled up around my neck twice, all blue, and quite a big head. My mother noticed early on lots of shortness of breath and cramps. I had my first tonic-clonic seizure when I was 18 months while my father was taking some photos in my…
