Orange Socks Community Stories

Harper models to inspire the world

Harper models to inspire the world

https://pulse.seattlechildrens.org/harper-models-to-inspire-the-world-youre-beautiful-in-your-own-skin/ read more

Through the Haze Living With Limited Vision

I was born three weeks early on June 22.1970. I had Snow White hair and these amazing blue eyes. The doctor who delivered me told my ... read more

Isabella

Isabella

A LITTLE MIRACLE Hi, my name is Isabella and I was born with spina bifida occulta with tethered spine syndrome, which meant that my ... read more

Isabella

Isabella

A LITTLE MIRACLE Hi, my name is Isabella and I was born with spina bifida occulta with tethered spine syndrome, which meant that my ... read more

Emma and Abby

Emma and Abby

Meet Emma and Abby...two sisters battling one Ultra-Rare disease! Emma, now four, had her first seizure when she was only 2 months ... read more

Chaul Jhin

Chaul Jhin

Dear GOD/GODS and/or anyone else who can HELP ME (e.g. MEMBERS OF SUPER-INTELLIGENT ALIEN CIVILIZATIONS): The next time I wake up, ... read more

Chaul Jhin

Chaul Jhin

Dear GOD/GODS and/or anyone else who can HELP ME (e.g. MEMBERS OF SUPER-INTELLIGENT ALIEN CIVILIZATIONS): The next time I wake up, ... read more

Kaysen

Kaysen

Kaysen was born with Congenital Heart Disease. He had open heart surgery at 2.5 months old. He came out of surgery on ECMO life ... read more

Augusta

Augusta

My name is Emmanuel Lloyd a resident of Indianapolis, Indiana. I am a Pastor and Social Worker. I serve as National Superintendent of ... read more

Cashen

Cashen

I am a single mother (divorced) who had Cashen through IVF. He is my light and the best thing that happened to this world. He makes ... read more

Antonio

Antonio

I was expecting twins November 17th, 2022. During the pregnancy I was told one of the twins had a high risk of having Downs syndrome. ... read more

Susie

Susie

Susie was diagnosed with SHINE Syndrome after she had a few seizures and we wanted to know what was causing them. Our family history ... read more

Emma and Abby

Emma and Abby

Meet Emma and Abby...two sisters battling one Ultra-Rare disease! Emma, now four, had her first seizure when she was only 2 months ... read more

Shiloh

Shiloh

Our sweet daughter was born two months premature with a genetic condition called Cri Du Chat Syndrome. She is missing part of the ... read more

Harvey

Harvey

When I was initially told Harvey has markers of down syndrome it felt like someone talking to me after just coming up for air with ... read more

Built For This

Built For This

In the days immediately following diagnosis, I wept from a place deep inside me and in anger and sadness cried out over and over: I’M ... read more

Through the Haze Living With Limited Vision

Through the Haze Living With Limited Vision

I was born three weeks early on June 22.1970. I had Snow White hair and these amazing blue eyes. The doctor who delivered me told my ... read more

Laila Rose

Laila Rose

This is Laila. She was born on June 25th, 2018 not breathing. Little did we know, she was a miracle. She was born with a congenital ... read more

Navigating unexpected journey of two children with two diagnosis

Navigating unexpected journey of two children with two diagnosis

Our daughter Parker was diagnosed with a rare genetic syndrome; Malan Syndrome a little before she was a year old. There are currently ... read more

Osteogenesis imperfecta- cushioned in love

Osteogenesis imperfecta- cushioned in love

My daughter Mya was diagnosed with Osteogenesis Imperfecta (OI) in utero. She is now 23 weeks old and diagnosed as a type IV. At ... read more

A different kind of perfect

A different kind of perfect

My husband and I started talking about names for our kids by our second week of dating. When we quickly conceived our first a few ... read more

Amelia’s story

Amelia Renee came into this world fast and furious on Aug 23, 2016. Her birth was so quick that she made her grand entrance in the ... read more

The Icing on the Cake

The Icing on the Cake

A year and four months ago we brought home our new son Timothy from Bulgaria. We already had four beautiful children at home, but as a ... read more

Angel Twin

Angel Twin

How do you say goodbye to one child while bringing home another? This is something I know many families with multiples are faced with: ... read more

Emma Grace

Emma Grace

Emma Grace was diagnosed with a severe Tessier Cleft prenatally during my 17 week ultrasound. After a pregnancy filled with ... read more

Emery

Emery

After a perfect pregnancy, I was 39 weeks 6 days when I went into L&D with contractions. I spent about 5 or 6 hours in labor not ... read more

Henry Garrett

Henry Garrett

Henry has Bardet- Biedl Syndrome, a rare genetic syndrome that causes obesity, vision loss, polydactyly (extra fingers and toes), ... read more

The Journey Of Laksh Kumar – A Super Cute Little Guy With An Extra Chromosome

The Journey Of Laksh Kumar – A Super Cute Little Guy With An Extra Chromosome

They say when you become a mother, your life changes completely. I had only heard this all my life, but on the 1 st of August 2017, I ... read more

Phelan Lucky

Phelan Lucky

Lily smiled at us when she was put in my arms after a text book delivery. She grabbed onto Daddy's finger and became "his girl" ... read more

Jr

Jr

We found out at our 20 week rountine anatomy scan that Jr. had Tetralogy of Fallot. We also found out he had “s genetic condition,” ... read more

Ami

Ami

We were asked in one of our DS [Down syndrome] groups to share one of our favorite photos of our littles.... This was our first ... read more

Dominic

Dominic

At birth Dominic was in heart failure, caused by an arteriovenous malformation (AVM) in his liver. He had also had a stroke caused by ... read more

Heidi

Heidi

Sometimes we're asked "what will Heidi be able to do in the future?" Well, some doctors and google searches will tell you all the ... read more

Brenna

Brenna

We washed up to our elbows with hot water and soap. We pulled on hospital gowns and medical gloves. We were nervous but ... read more

Cornelia de Lange

Cornelia de Lange

The memories from that beautiful day in October are sometimes too intense to relive. You were two days old and it was my 25th birthday ... read more

Salvador

Salvador

When Salvadore was born he was a little bit underweight but nothing to be worried about. When we got him his breathing sounded funny, ... read more

Anderson

Anderson

In Dec. 2016 we discovered we were pregnant after suffering a miscarriage 5 months prior. We were so excited, this was our baby that ... read more

Elizabeth

Elizabeth

Jordan and I found out we were expecting and could not have been more excited. This was our first baby and we were so nervous, but so ... read more

Gabriel

Gabriel

On June 20, 2018, I gave birth to a precious child, Gabriel. During my pregnancy, he was diagnosed with Alobar Holoprosencephaly, and ... read more

Jack

Jack

When I was about 30 weeks pregnant with my second son, Jack, my belly just grew over night. All the ultrasounds were normal, his ... read more

Down syndrome

Down syndrome

Wondering what we could have done differently at different points in our lives is a tale as old as time. My husband and I found out ... read more

Oliver

Oliver

We were elated to see the little heartbeat on the screen at our ultrasound after two previous miscarriages. We had been waiting and ... read more

Lilah

Lilah

What I wish I could have told myself when I first received Lilah’s diagnosis [Achondroplasia, a type of Dwarfism] and my mind ... read more

Halle

Halle

My daughter, Halle, is 3 months old. Her rare disorder was a complete surprise to us. While I was pregnant we were told everything ... read more

Kenai

Kenai

I know social media isn't everyone's jam & I know it gets some flack. I also know others are totally against sharing their lives ... read more

Indy

Indy

Last night we were getting Indy ready for bed and I caught B just staring at her, watching her every move with nothing but love in his ... read more

Lachlan

Lachlan

Many of you may be wondering what exactly is Lachlan's story and the truth is we don't really have answers yet so we don't know either ... read more

Amelia

Amelia

Once upon a time, there was a little girl named Amelia. I carried her body as part of mine for 9 months, knowing that as long as she ... read more

Primrose

Primrose

Tiny 2 year old Primrose. We were still learning one another. She was still learning to trust, to be held, to eat and to drink. Yes- ... read more

Anencephaly

Anencephaly

I kept asking God for a miracle. And I knew my miracle would be what many wouldn’t consider a miracle. But I knew God would give me ... read more

Claire

Claire

Today, our sweet, angelic Claire turns 17!!! Yep, same kid who wasn’t supposed to live to age 1. SEVENTEEN, YOU GUYS!!!!! I look back ... read more

Charlie

Charlie

Like most new parents, the first year of our baby’s life was not easy. Our baby girl, Charlie, was a terribly grumpy baby. She cried ... read more

Lottie

Lottie

At our 20 week pregnancy scan we were excited to find out we were having a little girl. Everything looked fine to us but the lady ... read more

Melanie

Melanie

Melanie was born with no eyes. She is my pride and joy, wouldn’t change her for nothing in this world. At when she was a young age, I ... read more

Cameron

Cameron

During my perfectly healthy pregnancy it never crossed my mind that our child would be born with special needs. Cameron would be smart ... read more

Brooklyn

Brooklyn

Since Brett and I knew Brooklyn had brain abnormalities while she was in the womb, a lot of grieving was done before birth. I am very ... read more

Nora

Nora

Our beautiful little Nora was born July 20, 2017 after complications leading to delivery by c-section at 35 weeks. After 9 days in the ... read more

Silas

Silas

Silas was born in November of 2012 with fiery red hair and bright blue eyes. He was healthy and so perfect looking; we were in love ... read more

Caleb

Caleb

Caleb was born June 26th 2016. He was born with Down syndrome and it was a surprise to us when he was born. We quickly learned that he ... read more

Oliver

Oliver

We were elated to see the little heartbeat on the screen at our ultrasound after two previous miscarriages. We had been waiting and ... read more

William

William

2 years ago at 10:04 am our lives changed forever. We walked into the University of Utah Hospital expecting to spend maybe a couple ... read more

Zee

Zee

I will never forget that visit on May 18, 2017. I was 20 weeks pregnant and we were going to have our anatomy ultrasound. During the ... read more

CdLS

CdLS

I grew up in a home where I was the oldest of 17 children. My parents adopted many children with special needs. One of my sisters, ... read more

CHD

CHD

Throughout my pregnancy I was told my baby was healthy and had a strong heart. When I went into labor I had to have an emergency ... read more

Jacob

Jacob

My son Jacob was diagnosed with Autism Spectrum Disorder in the summer of 2016 when he was 18 months old. It took me a very long time ... read more

Cornelia de Lange

Cornelia de Lange

The memories from that beautiful day in October are sometimes too intense to relive. You were two days old and it was my 25th birthday ... read more

William

William

I have my own story of heartbreak and sorrow that turned to great joy and happiness with my son. Your page shows the true joy that ... read more

Gio

Gio

My whole pregnancy my husband and I were told that everything was okay with our son, blood test and ultrasounds all came back normal. ... read more

Anorectal Malformation

Anorectal Malformation

I still can hear that nurses voice when she said, “this baby doesn’t have a rectum!” I woke up and tried to get up, but of course I ... read more

CHD

CHD

At 33 weeks my little guy came into this world. He had stopped growing a couple weeks prior but he was beautiful. Born not breathing ... read more

Gene Lottery

Gene Lottery

My family won the gene lottery. My husband has DiGeorge and we found out through our second child, I have 7q36.3. and found out ... read more

Lucas

Lucas

Lucas was born 4/1/14 and a perfect 5lb 7oz. It was a perfect birth, and perfectly ignorant of what's to come. All of a sudden nurses ... read more

Twins

Twins

I had twins and everything looked normal on ultrasounds. For some reason I went into preterm labor twice. The first time they stopped ... read more

Frank

Frank

My son, Frank, was born on October 5, 2017 with Dilated Cardiomyopathy. He has been hospitalized since birth. He is now 14 weeks old. ... read more

Serenity Grace

Serenity Grace

At 17 weeks pregnant Amy was told that her baby, Serenity Grace, had Anencephaly; a rare and fatal neural tube defect in which the ... read more

Sofia

Sofia

At 7 months we noticed that Sofia wasn't meeting milestones such as sitting up and putting things in her mouth. We also realized that ... read more

Kynleigh

Kynleigh

Kynleigh she was born full term. At 8 days old she passed out in my arms and was pronounced dead upon arrival at the hospital. I ... read more

Michael

Michael

Michael was diagnosed with Hypoplastic Left Heart Syndrome at 18 weeks gestation after a routine ultrasound showed deformities of his ... read more

Emma

Emma

After years of trying to conceive, my husband and I received the best surprise, we were pregnant! At 10 weeks gestation, we found out ... read more

Luxton

Luxton

Luxton was born at 37 weeks gestation due to decreased fetal movement. As soon as he was born a code blue was called due to no fetal ... read more

Abigail Grace

Abigail Grace

Abigail Grace made her miraculous entrance at 29 weeks gestation. She weighed 2 pounds and and was diagnosed in-utero with Omphalocele ... read more

Robbie

Robbie

When our daughter, Robbie, was not reaching the milestones her peers were, she was assessed by professionals and deemed global ... read more

Moa

Moa

When I was pregnant with Moa I felt something wasn’t right. But, I didn’t know that Moa had Down syndrome until she was born. Two ... read more

Sophie

Sophie

When Sophie was born, there was something quite unusual with her legs, they were extremely short. Later that morning the pediatrician ... read more

Nolan

Nolan

My husband and I went in for our 18 week ultrasound to see our littlest peanut for the very first time and to find out if we would be ... read more

Izabella

Izabella

Izabella was born at 34 weeks due to my preeclampsia. She was perfect during pregnancy, but hours after she was born everything ... read more

Charley

Charley

We found out about Charley having Trisomy 18 early on. We were given the usual 2 options. It wasn't a choice. If she wasn't going to ... read more

Max

Max

At 12 weeks [pregnant] we learned that we were having a son and that he likely had Down Syndrome. We were overwhelmed by fear of the ... read more

Kensley

Kensley

Kensley was born without eyes, a rare genetic condition called Anophthalmia. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ I found out about it the day ... read more

Lottie

Lottie

At our 20 week pregnancy scan we were excited to find out we were having a little girl. Everything looked fine to us but the lady ... read more

Paislee

Paislee

Our princess was born on September 16, 2016 with Tetralogy of Fallot and Pulmonary Atresia. While in labor, the nurse noticed that ... read more

Scarlette

Scarlette

It started off like every other “normal” pregnancy.But at each ultrasound the sonographers would mention the baby was transverse ... read more

Hind

Hind

Hind was born on June 9th 2016. My pregnancy and labor was uneventful, and she spent the first eight hours at the ward with me. The ... read more

Mila

Mila

After an early prenatal ultrasound our excitement turned to fear and worry. The pocket of fluid at the back of her neck was ... read more

Mia

Mia

Mia is our first baby. When we got our prenatal diagnosis of Down Syndrome at 11 weeks we were shocked.At first when I received the ... read more

Angel Elizabeth

Angel Elizabeth

Jordan and I found out we were expecting and could not have been more excited. This was our first baby and we were so nervous but so ... read more

Luke

Luke

When Luke turned one, he wasn't gaining any weight and he lost his hair. After a year of doctors appointments and testing, we found ... read more

Marios story

Marios story

Marios story Marios bio mom was homeless and a diabetic. Being homeless she didn’t have anywhere to refrigerate her insulin. By ... read more

Surprise CHD’s and Brain and spinal abnormalities

Surprise CHD’s and Brain and spinal abnormalities

My pregnancy was already a high risk pregnancy as an auto immune illness sufferer myself,but baby girl got such detailed care from a ... read more

Defying Odds

Defying Odds

Impatiently waiting to find out the gender. Waiting for the 20 week ultrasound to find out what we were having. The day finally came ... read more

Choosing hope

Choosing hope

At 27 weeks pregnant I found myself in the emergency department with symptoms of preeclampsia (high blood pressure). While doing tests ... read more

Rosie

Rosie

Our sonographer said, "I think this baby has something wrong with it". Multiple scans showed short arms and legs and a 'barrell ... read more

Owen

Owen

3 years ago we took our 2-month old baby boy in to get his eyesight tested, and came out with a soul crushing diagnosis of albinism. ... read more

Limb difference

Limb difference

My son was born with one leg half the length of his other. His right leg was malformed and missing bones and ligaments. We have to ... read more

Nova

Nova

I had a 2% chance of having a child will Down syndrome. I had the quad test while pregnant, and it came back that she might have Down ... read more

Brighton

Brighton

At our 20 week scan we found out that our daughter had many abnormalities. She had a heart defect called tetralogy of fallot, the ... read more

Koko

Koko

When the 20 week morphology scan showed abnormalities with the development of Koko's heart and brain the doctor initially made it ... read more

Maeve

Maeve

Maeve was born at 35 weeks gestation after an ultrasound just days earlier picked up a brain anomoly. At 2 days old, she was diagnosed ... read more

Josie

Josie

My whole world fell apart in that moment. I don't let my mind go back to that night very often. It was suppose to be one of the best ... read more

Monroe

Monroe

I had no idea she would be born without eyes!" ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Monroe was born on her actual due date. As soon ... read more

Livia

Livia

While I was pregnant with our daughter, Livia, she was diagnosed (via amino) with 13q deletion. 13q deletion is a very rare ... read more

Kylo

Kylo

During my pregnancy with my son Kylo, we had extra ultrasounds because blood tests showed low PAPP-A levels, which is where the baby ... read more

John

John

We had no concerns about John when I was pregnant, despite being high-risk because of my own medical history. When John was born at 39 ... read more

Max

Max

At 12 weeks [pregnant] we learned that we were having a son and that he likely had Down Syndrome. We were overwhelmed by fear ... read more

Trisomy 9p

Trisomy 9p

My son was born with Trisomy 9p on December 21st 2011. He was born with fluid around his kidneys, 2 small holes in his heart, fluid ... read more

Veda- Our destined child

Veda- Our destined child

I have always been fascinated with the thought of adoption ever since I was a teenager. I could never understand the significance of ... read more

Our Sweet Alice Grace

Our Sweet Alice Grace

Our second daughter, Alice, has Down syndrome, and was diagnosed after she was born. To say the least, we were shocked and a little ... read more

Damian’s Story

Damian’s Story

Damian is a sweet 4 year old with an amazing smile. ♥️ Before Damian was born, he suffered from bilateral strokes in ... read more

Alper

Alper

This is Alper. He has Cri Du Chat syndrome. Cri Du Chat is also known as Cat Cry syndrome. Infants born with CDC have a cry that ... read more

Mason

Mason

Mason is one year old, and was diagnosed with Septo Optic Dysplasia (SOD). He was born blind, and we were told that he would never be ... read more

Evan

Evan

Evan's diagnosis was given 2 days before his birth by using 3D and 4D ultrasounds. We had suspicious ultrasounds starting at 27 weeks ... read more

Noonans

Noonans

5 months after she was born we got a diagnosis..Noonans. We had no idea what Noonans was and we had to deal with a baby who not only ... read more

Helianny

Helianny

When I was 4 months pregnant, doctors gave me the news that Helianny would be born with multiple malformations due to Amniotic Band ... read more

Kensley

Kensley

Kensley was born without eyes, a rare genetic condition called anophthalmia. I found out about it the day after she was born. We ... read more

Stronger than you think

Stronger than you think

We went in for a routine ultrasound at 34 weeks. This is where they discovered that my unborn baby had fluid on his brain and enlarged ... read more

Luke

Luke

When Luke turned one, he wasn't gaining any weight and he lost his hair. After a year of doctors appointments and testing, we found ... read more

Cenk

Cenk

My cousin was born with Angelman syndrome. After he was born, it took two years until he got a diagnosis. It was a really difficult ... read more

Deacon

Deacon

Deacon was born with ATR-X syndrome (Alpha Thalassemia Retardation syndrome), which explains his endrocrine problems, developmental ... read more

Mila

Mila

After an early prenatal ultrasound our excitement turned to fear and worry. The pocket of fluid at the back of her neck was ... read more

Epilepsy

Epilepsy

In December 2015, I was going into the kitchen, and then suddenly face planted between the kitchen and the family room. Apparently I ... read more

Henry

Henry

My wife and I had our first child, Henry, on St. Patrick’s day in 2014. Little H was beautiful. This was OUR boy, made of the same ... read more

Lauren

Lauren

This is my gorgeous sister Lauren Wescott. Lauren has Cerebral Palsy, and Spastic Quadriplegia. She just turned 23! She is a gorgeous, ... read more

Microcephaly, GBS Meningitis, severe brain damage, hydrocephalus, hypertension and seizure disorder

Microcephaly, GBS Meningitis, severe brain damage, hydrocephalus, hypertension and seizure disorder

At 36 weeks pregnant, I was swabbed for GBS Meningitis -like every other pregnant woman does -and it came back negative. She was ... read more

Lily

Lily

Seven and a half years ago I was pregnant with our 10th baby. I went in for a routine ultrasound at 20 weeks, during which several ... read more

Autism

Autism

When i was two, my brother was born. By the time he was one he wasnt walking, wasn't talking, and wouldn't listen. He had his own ... read more

Valleria Elinor

Valleria Elinor

When Valleria Elinor Huang was born I thought the world was over. You always think it will not happen to you; but when it does that’s ... read more

Harrison

Harrison

Early January, we were sent to a perinatologist due to ultrasound findings that indicated concerns. The perinatologist confirmed the ... read more

Isabella

Isabella

Isabella was diagnosed at 16 weeks in-utero with hydrocephalus. She is an identical twin as well. As soon as we delivered, they ... read more

Benny

Benny

In the middle of the red desert in Southern Utah is a tiny Gypsum mine where my kids like to explore and dig for the pure white ... read more

Limb difference

Limb difference

We found out about our daughters differences at the 18 week ultrasound, but they had no idea what it meant. Since Limb Differences can ... read more

Madelyn Grace

Madelyn Grace

We went in for our 20 week anatomy scan having had previous ultrasounds during the pregnancy. We were told we were having a girl and ... read more

Lua

Lua

At the 12weeks scan my partner and I were so excited to see our baby and hear her heartbeat.. We were both healthy and young and no ... read more

Parker

Parker

We found out when I was 15 weeks pregnant that there was a 99.7% chance that he would have Down syndrome. At first, it was so ... read more

Lucy

Lucy

At our 20 week ultrasound; the tech seemed to be struggling with something. She said she couldn't get good angles on some of the ... read more

Faith

Faith

Our baby Faith had Full Trisomy 13. Trisomy is a genetic disorder in which a person has three copies of a chromosome instead of ... read more

Maddux

Maddux

When we received the news that Maddux would be born with the birth defect spina bifida, our worlds were turned upside down. And just ... read more

Bastian

Bastian

Bastian has ABS [Amniotic Band syndrome] on all four limbs, his hands each have a thumb (hence his two thumbs up) and the rest of his ... read more

22q.11 deletion syndrome

22q.11 deletion syndrome

We found out at 18 weeks during our anatomy scan that the heart looked a little too vertical and there looked to be some blood flow ... read more

Malakye

Malakye

I was told at my 28 week ultrasound that my baby would be born missing his right hand and forearm. Having previously had a son ... read more

Brody

Brody

We knew from our first ultrasound that Brody had #dwarfism, and unfortunately we received conflicting opinions throughout the ... read more

Cameron

Cameron

During my perfectly healthy pregnancy it never crossed my mind that our child would be born with special needs. Cameron would be smart ... read more

Indy

Indy

We did not do any genetic screening during my pregnancy. We had done invitro, so felt confident about having a "healthy" baby. We were ... read more

Brody

Brody

I received the phone call from the genetic counselor while I was at work. I walked into a private room, and just listened. She ... read more

Jordan Grace

Jordan Grace

What would I tell my scared, worried, pregnant self about what life would be like today? I would tell her, everything will be ok! ... read more

Giselle

Giselle

At 20 weeks pregnant, they noticed ventriculomegaly on the left side of her brain. They assured me that it was mild and there was ... read more

Dwarfism

Dwarfism

We faced two (different) terminal diagnoses and encouragement to terminate with my second daughter. Doctor's were 99.9% sure she ... read more

King

King

At 32 weeks King was born via c section due to placenta eruption. He was pronounced dead after 7 minutes of trying to revive him. He ... read more

Josephine

Josephine

Our story began with an ultrasound. Like any other parent we were so excited to see a glimpse of our baby. The scan took longer than ... read more

Treq

Treq

Treg is my only child, I was 23 when I got pregnant, even after I got back a positive on the genetic quad screening the doctor told me ... read more

Finn

Finn

My husband Michael and I have been married for 8 years and we have two children together. Our oldest son, Mason just turned 3 and our ... read more

Luca

Luca

I vividly remember the first time the doctors said 'dwarfism', the same day Luca was born and while he was in the NICU for a ... read more

Ellie

Ellie

When Ellie was born, I tried my hardest to keep it together. I did pretty good for the most part. There were some times that were just ... read more

Elin

Elin

The moment you slid silently into the world, marble white and flanked, by the gasps of the midwives and the sound of the emergency ... read more

Foster

Foster

Foster has a very rare condition, caused by a genetic mutation to his SCN8A gene but the larger umbrella diagnosis is ... read more

Charlee’s Journey

Charlee’s Journey

This is Charlee Lynn. She is my 1%. At my 12 week scan our doctor noticed something was wrong. Our little baby had a cystic hygroma on ... read more

Passing On A Genetic Condition

Passing On A Genetic Condition

During both of my pregnancies I wondered if my baby would be born with Ichthyosis. After all, I have it and it’s a 50% chance for it ... read more

Behind it all, her journey

Behind it all, her journey

The years have been both kind and unfavorable to me, but none the less I have overcome all odds against me. I am Sanshegay Peart a ... read more

THIS is the face of invisible illness

THIS is the face of invisible illness

You wouldn't think it to look at him-he doesn't look sick. In this picture you see a perfectly normal, happy and healthy 4 year old, ... read more

Jay

Jay

"Exactly one year ago today we were told there was something "wrong" with our baby. We were told his hands weren't opening and ... read more

Spina Bifida

Spina Bifida

"This, my friends, is what spina bifida looks like in my house. I became a single, expectant mother at age 28. I found out that my ... read more

BerkLee

BerkLee

"At 5 days old we finally got discharged from the hospital. BerkLee was only 4 lbs 13 oz and was taken c-section at about 6 weeks ... read more

Silas

Silas

"During our 20 week ultrasound, we found out that Silas’s stomach was not very big and they were having trouble seeing it. After a ... read more

Valerie

Valerie

"We, Daniel and Jeanette, are parents to an amazing two-year-old named Valerie. Valerie has had a rough start to her life; she has an ... read more

He Does All of These Things

He Does All of These Things

"On October 26th of 2016 we welcomed our 4th baby, a son to our family. He is our tie breaker making it 2 girls & now 2 ... read more

Expect Happiness

Expect Happiness

"My sweet baby girl. If I had know the wonder and joy you would bring me I never would have cried, I wouldn't have felt fear and I ... read more

Quinnlee

Quinnlee

"This is Quinnlee. We found out at a 13 week private ultrasound we were having a baby girl, but that there was something seriously ... read more

Choose Life

Choose Life

"We chose LIFE! This is a picture of Finneas at 14 weeks. They showed us these pictures, told us our baby likely had a trisomy ... read more

Mikey

Mikey

"We found out that Mikey has Down syndrome the day after he was born. At first I was scared and didn't known what to expect. My ... read more

Jackson

Jackson

"I worried throughout my entire pregnancy. Our testing and ultrasounds showed a perfectly healthy baby. At our last ultrasound, the ... read more

Jackie

Jackie

"We were happy to be expecting our second child, and learned through early blood testing that it was a baby girl. We were thrilled. We ... read more

Zoey

Zoey

"In the spring of 2009 we found out we were expecting our fourth child. When we were told we would have a baby girl -I was thrilled! ... read more

The Most Rewarding Experience

The Most Rewarding Experience

"We went in for a routine ultrasound at 34 weeks. This is where they discovered that my unborn baby had fluid on his brain and ... read more

Hatty

Hatty

"Hatty was born at 38+6 weeks being induced after no movement...she was taken away to intensive care after 12 hours as she started to ... read more

Harlow

Harlow

"During pregnancy they had noticed complications with fluid on her brain. I was asked multiple times to terminate the pregnancy but I ... read more

Anonymous

Anonymous

"We could've missed this. Prayerfully this precious little love will be joining our family very soon. When we decided to adopt ... read more

Down syndrome

Down syndrome

"My pregnancy was uneventful with the exception of a small scare…[after a second ultrasound, they said] My little one was perfect. I ... read more

Marie-Claire

Marie-Claire

"The day Marie-Claire was diagnosed with Williams syndrome was a dark day. I wish I could go back in time and tell that terrified and ... read more

Nora

Nora

"Norah has potentially developed a few things that will require the care of multiple specialists: Spina Bifida, Microcephaly, ... read more

Faith

Faith

"We had three boys biologically and even though they do not have Down syndrome, two of our boys have special needs. It was our journey ... read more

Owen

Owen

Owen has Lissencephaly, spastic quadriplegic cerebral palsy, cortical vision impairment, epilepsy tendencies and global development ... read more

Anderson’s journey has been quite the adventure

Anderson’s journey has been quite the adventure

After a grueling labor I knew something was wrong. Anderson’s breathing was labored and too fast. He was rushed off to the NICU where ... read more

Down syndrome

Down syndrome

"I knew I loved her through [my] whole journey of pregnancy and being a fighter for her life while others tried to disvalue her based ... read more

Chiara

Chiara

"What began as a simple treatment for her clubfoot, to an unfolding of a more serious diagnosis, thought to impede her ability to ever ... read more

Ansley

Ansley

"Ansley is diagnosed with Lissencephaly, Microcephaly, Cerebral Palsy, Epilepsy, Failure to Thrive, Optic Nerve Hypoplasia, Cortical ... read more

Karen

Karen

"Caleb was definitely a “caboose” baby, arriving some 17+ years after his sister. We looked forward to life with a little boy, and ... read more

Worth It

Worth It

"When we got a prenatal diagnosis for Down syndrome, I thought it was the biggest thing in the world and that I'd be automatically ... read more

Lacey

Lacey

"If I could tell you one thing that would stick with you forever about raising a child with special needs, I would tell you this: it's ... read more

Amy

Amy

"I can't wait to kiss this little face. This was her 20 week ultrasound where we got to see her perfectly healthy anatomy. As soon as ... read more

Sarah

Sarah

"My mother was actually told by doctors that I would die or be born with deformities and she would die as well. ⠀ ⠀ She was called ... read more

Josiah

Josiah

"Two months with my brave boy! You still love to eat more than anything and also taking night walks. Daddy walks you around the house ... read more

Jude

Jude

"My pregnancy definitely had it's scares and challenges but it was also so beautiful and wonderful. I will forever cherish those 9 ... read more

Zach

Zach

"Our thoughts quickly moved through the meaning of the word wonder to then..."desire to be curious to know something" We wondered why ... read more

Mellie

Mellie

“If I could describe [having a child with a disability] in one word, it would be perfection. Mellie is my dream come true.” -Amy read more

Only the Lucky Ones

Only the Lucky Ones

"Annie is my sister, and has lived with me since she was 16. I had my first baby when Annie was 18 and she has been the best auntie ... read more

Spina Bifida

Spina Bifida

"I kiss this scar every day. I know every line, every bump, and it's perfect. I'll forever be grateful for his amazing Doctors and ... read more

Robyn Ott

Robyn Ott

I was born in 1979, the youngest of six girls. My parents had no idea there was anything amiss with the pregnancy. When I was born, my ... read more

Joshua

Joshua

This is my baby Joshua he is 1. When we were pregnant, at our 20-week scan, we found out that he had clubbed feet and a horseshoe ... read more

Layllahs life

Layllahs life

This is layllah she is almost 2 years old. She was diagnosed 2 months ago with a super rare dwarfism. No more than 20 people in the ... read more

Kleefstra syndrome

Kleefstra syndrome

If you want to share Azies story... A’zLynn or Azie was born March 2017. We knew at her 20 week ultrasound that she had a problem ... read more

Unbreakable Hadley

Unbreakable Hadley

Hadley Larsen is 6 She was born on Nov. 15, 2012.  Hadley was diagnosed with a rare genetic disorder called Osteogenesis Imperfecta, ... read more

Learning about Microdeletion Syndrome

Learning about Microdeletion Syndrome

Finding out we were expecting was the most exciting news. 2 years prior to this pregnancy we lost our daughter. She was born at 24 ... read more

Melanie Strong

Melanie Strong

❤️ Melanie thrived for three month's and three day's having Complete Trisimy 22...Trisomy 22 is a chromosomal disorder ... read more

One step closer for Natalie !

One step closer for Natalie !

Natalie was born at 35 weeks, my water broke around 10pm on March 11th. We were so excited but also so nervous ! We hopped in the car ... read more

My Precious Destiny ❤️

My Precious Destiny ❤️

My husband and I wanted to have a baby. Even way before our baby was conceived, my husband said to me if I ever have a girl I’m going ... read more

what “H.I.” means to us! A baby born with very a rare skin condition.

what “H.I.” means to us! A baby born with very a rare skin condition.

Every routine pregnancy check up had gone well. Our baby had a strong heartbeat, 10 fingers, 10 toes and a cute button nose. There was ... read more

Nevertheless, She Persisted!

Nevertheless, She Persisted!

Haddie came into the world on September 5th 2014! Things were difficult for her from the first day earth side- starting with ... read more

The CP fighter

The CP fighter

I feel so blessed to be having this angel with me! I was an active pregnant with no complaints or complications. Oct 8, 2017 was the ... read more

no cons, only PROS.

no cons, only PROS.

Following my anatomy scan at 22 weeks, Emerson was diagnosed with hemimegalencephaly (the left side of her brain was growing faster ... read more

Noelle’s Light

Noelle’s Light

In June, 2016, my husband and I found out that we were expecting our first child. We were so excited to become a family of three. At ... read more

Vicente Journey

Vicente Journey

We found out at our 20 week rountine anatomy scan that Jr had Tetralogy Of fallot, we also found out he had “ A genetic condition” but ... read more

My Angel Mia

My Angel Mia

Mia was my second baby. During my 4 month of pregnancy I got the best news I was going to have a baby girl I was really excited but ... read more

Sawyer’s lethal dwarfism

Sawyer’s lethal dwarfism

We went in for our routine anatomy scan at the end of May 2018 for our 4th child. During the scan, we noticed that the sonographer was ... read more

Update on Massimo

Update on Massimo

Massimo is now 6 years old. Will be 7 in December. Massimo is in a mainstreamed classroom. He is in special ed first grade. Massimo ... read more

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