Meet Faith

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... read more

Meet Carrie

Carrie’s JourneyWe 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... read more

Meet Jacob

Jacob’s JourneyJacob 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... read more

Meet Shauna

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 a way to... read more

Meet Sierra

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... read more

Meet Jack

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... read more

Meet Mattias

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... read more

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... read more

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... read more

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... read more

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... read more

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... read more

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... read more

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. On the day that the prenatal ultrasound showed our third child would be a girl we also found out that there may... read more

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. When JoJo was born,... read more

Meet Grace (2003 – 2011)

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... read more

Meet Gabriel

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... read more

Meet Cecile

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... read more

Meet Christopher

It has been awhile since I have written. I guess since Christopher's laser ablation surgery he has been doing so well and there has not been much to say. He completed kindergarten this past school year without any learning problems. He has become a avid reader and... read more