Every Story Matters – Sharing your HH story can increase understanding and awareness.

The process of sharing this often difficult journey can be healing for both you and others in our community. If you’re interested, please complete this form and we’ll start the process.

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 something not right. This 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 believing for 30 years that my…

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Meet Jacob

Jacob’s Journey Jacob 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 couple of years when he…

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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…

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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 and enjoying the attention. However, within…

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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 of Philadelphia (CHOP) with…

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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 our family’s daily life,…

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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 CJ. He was born with a rare brain…

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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 something was amiss. Mark often made…

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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 months life was normal for…

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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 and we could not figure…

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