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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,…
“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…