MEET OTHER FAMILIES

Meet Kate

When Kate was born in August of 2014, in Fargo, ND, the nurses immediately commented on how ‘vocal’ she was. We were a sleepless family, as she would always wake in the night, making her ‘crying noise.’ She often had episodes throughout the week, where it would last...

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Meet Charlotte (Charli)

Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on the 22nd July 2004 in Brisbane, Queensland, Australia. My pregnancy was not complicated, I did have gestational diabetes, but a mild form that was controlled by diet....

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Meet Layla

Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date in the biggest snow storm that year. We joke that she has been doing things her own way since before she was born. She is very spunky, strong willed and quite the...

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Meet Anniston

Josh and I found out we were pregnant with Anniston on our one year engagement anniversary (about 2 months before we got married) - the pregnancy was unplanned but we were both excited and felt blessed to have been able to conceive so quickly. During my pregnancy I...

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Meet Abby

Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In utero, the doctors noticed she had a small dilation in one of her kidneys but everything else was perfectly normal. She had a normal birth and she had an ultrasound on...

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Meet Elleanor

Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was healthy and we were able to take her home and try our hand at this parenting thing. She was growing normally, but would make this weird grunting sound. At two months old I...

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Meet Elizabeth

  HH is for life. In 1957 my wife was born, it was a normal birth but within weeks it was clear all was not right with Little Elizabeth. Doctors in those days had no idea how to diagnose complicated conditions in babies. As Elizabeth grew Epilepsy was confirmed but no...

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Meet Carson

Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound revealed that Carson had a very large cyst in his brain. Further follow up suggested that it was coming from the hypothalamus region. We delivered normally at 39 weeks,...

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Meet Glen

I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of 43 with a 2.5 cm Hypothalamic Hamartoma, and 2 other very rare brain conditions (Unilateral Polymicrogyria and Unilateral Schizenchephaly). About 2 months after being...

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Meet Kaitlyn

Kaitlyn's HH Journey We brought our perfect beautiful daughter home two days after she was born.  Soon we realized that we had a fussy baby who wouldn’t sleep unless we held her and was sometimes inconsolable.  When I took Kaitlyn to the pediatrician for her two-week...

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Meet Mason

Mason's Story It was a Tuesday, September 22nd 2015.  Mason was about 19 months old and we had run into the grocery store to pick up a few items.  He was babbling away, sitting right in front of me.  Next thing I knew he was no longer babbling, no longer clapping, no...

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Meet Gavin

Gavin’s Story Gavin was born on time and had a normal delivery. From the time he was about two weeks old we noticed him doing a sort of grunting mixed with squinting his eyes, like he was in pain. We noticed it happening quite frequently so we brought it up to his...

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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...

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Meet Carrie

Carrie’s Journey We 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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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,...

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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...

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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...

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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...

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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...

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