GRI Stories
Submit your story
GRI Disorder stories help us raise awareness and advocate for funding and research. They also help newly diagnosed families feel less alone in the world of rare diseases. Please consider sharing your story and making a difference in the lives of families affected by GRI Disorder. Pictures and videos, even without telling your story, are immensely helpful to accomplishing our mission of raising awareness, funding research and supporting families.
To submit your story, photos or video clips for use on our website, brochures, social media, and/or other promotional materials, please email Lauren at lauren@curegrin.org
Asa
Even though Asa has three diagnoses, he absolutely does NOT let anything slow him down
Levi
Levi is an energetic, curious and friendly 11 year old recently diagnosed with GRIA1.
Samantha
Samantha loves to swim, to listen to music and to try all kinds of foods. She’s affectionate and capable of
Victoria
My daughter, Victoria, was born on 10/28/2018 as a healthy girl. There was an episode of fainting in the first
Lucas
Growing up, I always wanted to advocate for those in need and to fight for what was right. Never in
Harrison
Harrison loves the water, butterflies, dragonflies, chickens and cows being his favourite things!
Emmersyn
Emmersyn, aka Emma, is my little girl; she is my second daughter and the bond that brought our blended family
Drew
Drew is my 12-year old little force of nature! She has a constellation of diagnoses and challenges, but she is
Remi
Remi is a sweet, loving little girl with a BIG personality. She loves Minnie Mouse, animals, and babies. She enjoys
Imogen
Despite everything, Immi is a social butterfly. Her eye contact is captivating, her laugh is infectious, she is cheeky beyond
Abby
Abby was born in December 2020 with two holes in her heart, called an ASD and a VSD (most likely
Ashleigh
Ashleigh has a very rare genetic disorder called GRIA2 related neuro development disorder. Ashleigh is 15 years old and her
Timothy
Our son, Timothy, is our third and last child. He was born in 1999 in Knoxville, Tennessee, three years younger
Keats
Meet Keats. Keats is 11 years old, and he is truly one of the most loving boys you could ever
Hayden
Hayden is 3 years old and was recently diagnosed with a rare Xq25 duplication involving the GRIA3 gene
Phoebe
Despite everything she has been through she is a very content and happy little girl whose smile makes even the
Richie
We live in the moment, we cry hard and laugh even harder, we watch the same episodes of wheel of
Edward
Our journey through this process and with our gorgeous Eddie has taught, and continues to teach us all so much.
Stella
We parents are trying not to ask ourselves questions about what Stella will be like when she grows up and
Wellson
Wellson knows several colors, basically every animal noise and can count to 10 with help. These little milestones are HUGE!
Jaydan
Jaydan is amazing. She is a loving, caring, hilarious daughter, sister and friend. Jaydan is nine years old and is
Lyana
Lyana is surrounded by love. Our daughter will be our lifelong fight and we know she will surprise us. It’s
Paul
Our sweet little guy came into our lives at three and a half years old through adoption.
Maximilian
Our son Maximilian has GRIA Disorder. GRIA Disorder is an ultra-rare genetic condition caused by a change in one of
Amarli
Amarli Broome lives in Australia with her Mum Jade, her Dad Lee and her two brothers Bohdi and Jordi. Amarli
Haley
You never know how special some moments are until you think you will never have them, and I will never
Arthur
Artur is a positive, friendly boy, not shy, and very sweet. Artur welcomes everybody with open arms and gives you
Katie
Our daughter Katie is an only child, is almost 16 years old, and has a rare gene mutation called GRIK2.
Elijah
My son, Elijah Reid, was diagnosed with GRIN1 c.2269 G>C variant at just one years
Estefano
Estefano attends school, where they give him his therapies and little by little, he makes
Cosimo
Cosimo Alessandro is a beautiful little boy with GRIN1 who lives in San Donaci, a
Kaitlin
Kaitlin has touched so many lives with her sweet and silent smile, courageous determination and
Willow
Willow enjoyed the school’s May Day celebration with the other children and liked her May
Morgan
Morgan is generally an extremely happy young lady who does laugh all the time! She
Myles
Myles is an extremely hard working and determined little boy. He works so hard every
Lucas
On January 31, 2022, we received the results of the last genetic tests carried out.
Levi
Levi loves playing with his brothers, silly songs, dancing, eating and playing with bubbles.
Wren
Wren is an inspiration to us daily, and the sweetest, toughest, bravest girl we’ve ever
GRIN Sibling: Abby
Abby Pellitteri, Twin Sister to Owen, shares her experience on being a sibling to her
Andrew
Andrew’s nurse noticed an “unresponsive episode” in which he momentarily stopped breathing. We would later
Lisa
Hello! Our family is from Russia, St. Petersburg! We have a three-year-old daughter and her
Dominik
Immediately after giving birth, he had to be resuscitated and then transferred to another, better-equipped,
Danica
Our family knew something wasn’t right when she could not lift up her head. Danica
Torri
October 18, 2000…the day our daughter, Torri Alexis Gilbert, made our family complete.
Gracie
Gracie was born on August 1, 2012 at 11:39am at Hunterdon Medical Center in Flemington,
Oliver
Our road to parenthood was challenging and we were thrilled to finally welcome our first
Ezra
Ezra came into the world on September 17th, 2018, surrounded by his parents and family
Dylan
Dylan was born with his hands and feet turned in. When asked, the midwives advised
Marcus
Marcus (3 years old) is bright, joyful, full of curiosity, and the kind of child who lights up every room. Until
Kaidyn
She is Kaidyn. We don’t know what this life will be like, but we know we’re on this journey together.
Madison
Madison is an extraordinary 11-year-old girl with a radiant smile and an unstoppable spirit. She has a heart full of
Aurora
Princess Aurora can’t talk, walk, crawl, hold her head up or eat. But what we have found in her is
Finley
He’s a happy boy who is passionate about football and WWE, he has a wicked sense of humour and is
Victoria
Victoria loves to swim, gymnastics, sing, and now she is learning to play piano. She is our inspiration and our
Sofia
Sofia is the most lovable little girl ever! She has beautiful red hair and big blue eyes and her eyes
Kaelin
Through it all, Kaelin never stops smiling and laughing, as if she is saying you have not beaten me.
Alex
Alex is the happiest little child out there. He has the absolute BEST smile and when he’s excited, the whole
Evie
For those of you who haven’t met my Genevieve yet, let me tell you her story, she is a very
Cece
She has taught us to celebrate all of life’s small wins and more patience than I ever thought possible.
Braylon
Braylon is the definition of love! He is 8 years old with GRIN2A and has overcome many obstacles that were
Clara
We gave Clara the middle name Hope because she had nothing but yet her smile was so bright and she
Elaina
Elaina is an incredibly happy kid. She loves music, dancing and everyone around her! She loves snuggles with her doggies
GRIN Sibling: Sierra
Sierra Wasielewski, Sister to Austin, shares her experience on being a sibling to her brother with GRIN Disorder.
Dean
Dean was born a healthy baby. Around the time he was two to four weeks old, we started to notice
Tom
We were on our way to the zoo on a typical Saturday when he had his first grand mal seizure
Vita
Vita was born in August 2013. She is our 5th child. During the pregnancy, I had a strange feeling that
Macsen
Macsen has the most cheeky personality- he’s learned to eye point to tell us what he wants and has learned
Chloe
We dream for the moment when our little girl can give us a caress or run to meet us. We
Benjamin
Benjamin Wann was diagnosed with Epilepsy at three years old, after multiple seizure types from myoclonic to tonic clonic lead
Emerson
Emerson is a fun, busy little 2 and half year old boy with a ferocious appetite. Emerson was born healthy
Brielle
My name is Brielle Anderson. I was born in 2013, when researchers found the deletion of the 16th chromosome called
Caroline
My name is Beth Brownell and this is my daughter, Caroline. She has the GRIN2A mutation.
Austin
On May 6, 2003, we were blessed with our son, Austin. At first, Austin appeared to be a healthy, strong
Greyson
Greyson is a charming, funny and hard working 10 year old. He loves YouTube, video games, swimming and being with
Grace
When Grace was born, she had a lot of digestive issues. She was diagnosed with allergies to certain foods and
Ethan B
Years and many, many tests after our search for answers began, Ethan was diagnosed with a GRIN2A mutation in January
Gabriel
We live in Greater São Paulo – Brazil Back in 2018 we were excited for the birth of our first
Remembering Arthur
To this day, I remember the first moment I saw my son Arthur right after his birth, which, I canguarantee,
Noa
Our daughter, Noa, turned 19 recently. Through genetic testing, we received her diagnosis ofGRIN2B-related disorder shortly after she turned 16.
Rowan
Rowan is our 4 year old Bee. He is so happy, lovable, and just happy go lucky all the time.
Ansel
The floor underneath our feet collapsed. We found out soon after that Ansel had a rare genetic mutation called Grin2b.
Brewer
Our days with Brew begin and end with endless smiles, giggles and so much happiness.
Hunter
We are so proud of Hunter, everything he’s accomplished and what we know is yet to come!
Remi
We go through many different emotions during this journey we are on with Remi. Life is hard at times but
Adam
Our journey began on November 23, 1991 when our son, Adam, was born. His entrance into our world was not
Charlotte
For many parents, a GRIN diagnosis results in many questions and very few answers.
Lacey
Lacey still can’t talk yet, but me and mom can tell what she wants 9 out of 10 times with
Elio
Our sunshine Elio was born in February 2009. He appeared to be healthy and looked like a little “Monchichi.” But
RayAh
Our journey and how it began. May 11, 2018, at 5:00 am started as the most exciting day of my
Haytham
I was, just as most moms when they discover they are expecting a child, so excited.
Holly
Holly surprises us all the time. She is still very delayed with cognitive function about that of a toddler and
Jordyn
In 2022 I was diagnosed with GRIN2D. After I was diagnosed with GRIN2D, I was at least glad to know
Wyatt
We were told Wyatt would not live to see his 1st birthday. He is now 4 years old and still
AJ
Meet AJ! All of AJs paperwork and report cards say the same thing, “AJ is such pleasant person, what a
Bata
Our only and beloved son, Bata, is 9 years old. While expecting him we imagined what he would be like,
Coco
This is not the life we expected for Coco or our family, however our love for her is infinite and
Skylea
Skylea was born on Feb 24, 2017. Things seemed normal until she was 3 months old.
Jude
Jude was born February 13, 2018. While Jude was born seemingly healthy, within the first few weeks he started having
Abel
Abel was born on February 15, 2021. (Literally in the middle of a blizzard). My pregnancy and birth was normal,