Read About Our Incredible SYNGAP1 Families

"SYNGAP1, What the heck is that?"

Five and half years ago, we took our beautiful baby girl home from the hospital. Life couldn’t have been more perfect…

"Big J’s Journey"

John was quiet in the womb.  Induced birth due to a pregnancy condition making John possible to die any time after 37 weeks, he was already 39 weeks.  John had a quiet cry, he didn’t fuss…

Roller Coaster Ride of a Lifetime

We are the Poiriers and we have two girls with SYNGAP1.  Our daughter’s names are Lily age 7 and Elise age 5,  Our journey began when we realized Lily was not developing “typically” so we started early intervention.  It has been quite the roller coaster since…

There is Hope!

I felt there was something different about my daughter Hope even as far back as when I was pregnant with her.  I kept having these recurring dreams that she was disabled.  I was so adamant that something was wrong.……..


Dance To The Best Of Your Own Drum

Ty was born on a stormy July 14th, 2015. He announced himself with a healthy, loud scream. Ty is our third child and by far the easiest baby. He slept through the night right away, nursed like a champ, loved hugs, and was always smiling.Around 4 months I noticed he was not interested in rolling over or looking at toys. He was just very content laying on his back and interacting with people.……..


Finding a Place in the World

In April of 2010 our son Will was born. He was a big beautiful wiggly baby of 9 pounds even. I was so in love with Will’s older brother Colin, who had just turned 2 at the time, and we were really happy and excited to have a second little boy and a brother for Colin to bond with. My pregnancy was completely normal. …….


A Perfectly Beautiful World

Claira Beth Brown was born on a gorgeous Sunday morning with the sweetest smile and the biggest blue eyes you have ever seen. Just like any typical family we were extremely happy and proud of our little baby girl.  When she was 3 months old the storm clouds started rolling in…….


"A Purpose Driven Life"

  Eleanor is our spunky, loving, and creative four year old. She was recently diagnosed with SYNGAP 1 at the end of this August, 2016, following the results of Whole Exome Sequencing through Children’s Hospital in St. Paul, MN. Eleanor was born a week overdue, with hip dysplasia and jaundice. Her first 4 months were spent in a hip harness, followed by a cranial cap for flat head. ……


The Durrett Family - Finding the Normal Button

Around age 2. We knew something was going on with our little Payton. She wasn’t talking as much as her sister. It took her almost 17 months to walk. We always called her our quiet child. During this time, we started looking into tests and procedures to uncover what’s going on with Payton……



Ena was born 20.02.2011. My happiness knew no bounds, I thanked God that gave me because I was desperate to. Childbirth has passed without problems, one received a score of 9. My dear, sweet, happy girl and I have a few days later arrived in a maternity home. Ena was a good baby, ……


Dr. Google - "No Answers This Time"

Ena was born 20.02.2011. My happiness knew no bounds, I thanked God that gave me because I was desperate to. Childbirth has passed without problems, one received a score of 9. My dear, sweet, happy girl and I have a few days later arrived in a maternity home. Ena was a good baby, ……


My Miracle!!

February 7, 2011 my whole world changed.  My baby hadn’t moved in my womb the way she had been.  I went to the doctor, they did a sonogram, and I was told I would have to have an emergency c section. At 1:54 pm my Elizabeth Grace was born; she was perfect, she needed oxygen at first but only for a short while. We were released normally, no delays.  I had my precious baby in my arms –  ……


Shopping for Syndromes

Sonny slept like a beautiful angel for the first five weeks of his life. I luxuriated in my perfect little family. My sweetheart husband, our toddler Willum was a delight, and now he had a little brother who I promised would play with him when he grew up a bit. It was a precious few weeks.  Little did I know that as Sonny slept seemingly peacefully, that under his golden hair, immeasurable and irreversible brain damage was occurring.  I guess I am glad I did not know this at the time.  And then, after five weeks, he woke up, and a dark cloud descended upon our peaceful house as Sonny’s restlessness……


Happy Father's Day

“Happy Father’s Day” I casually told P almost 7 years ago.  The look on his face said it all, “oh.”

Since then, there have been many “oh” moments.

There have been moments of BLISS.

Like seeing P do kangaroo care as they wheeled me out of the operating room, still somewhat sedated.  And watching the hospital staff pause as they witness it, too. Or like having K wrap his tiny little fingers around my neck.  Icy cold as they sometimes may be, I’ll never get tired of this.

There have been moments of hilarity, like me shouting “boo!” the moment K found me in a hide and go seek game, which sent him shrieking across the room as he quickly, frantically and excitedly toddled away from me.



A World Filled With Abbreviations

In 2005, Jaxon entered life experiencing a traumatic birth with a nuchal cord (umbilical cord wrapped around the neck) three times, which required quick actions resulting in a fractured clavicle and physical stimulation with oxygen blow-by before he started breathing.  Despite all of this, his Apgar Scores were normal and he and mom (Monica) were discharged after 2 days.  At 8-months during a long drive across country (NC to AZ), we joked that Jaxon earned $1000 a day because he rarely cried………


Little Miss A

When my sweet daughter was born she came into this world just like any other healthy screaming baby.  There was no indication that anything was amiss.  She nursed well, she preferred to nap in my arms, and she loved her swing.  We would go to her monthly doctor’s appointments and answer their questions and walk away happy that we seemed to be doing okay as her parents, a job that was very new to us first timers. ……


English & French: "Finding Hope"

This is our story, the story of a child, waiting for 8 years and then this birth, which we give joy to finally be parents. We do not know how one becomes a parent; you learn to be – our natural instinct to guide us this far. Around the age of six months Juliano roost with eyes in the air at the time of dripping!!! The pediatrician did not see fit to make examinations and then Juliano moved into the house with a trotter pretty quickly.  It was not until around the age of 15 months that I realized that something was not going well. My pediatrician told me not to worry, that boys are slower than girls to walk and to talk!!!! Around the age of 27 months I require careful consideration and there the nightmare begins……


Our Journey Started

Our journey started when our daughter, Jadyn, didn’t do well at her 9-month check-up as a baby. She wasn’t eating and her muscle tone started to tighten up. That is when we were referred to a neurologist, and the mystery began.


“Building Bridge of Hope to a Cure”

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