All in the Family
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Meet Caleb Whitehurst
From birth Caleb had unusual issues. He couldn't ever latch when breastfeeding, he had sever GERD causing all sorts of testing to be performed starting at 6 days old, he was...
The Prevett Family
Lexi was immediately admitted to the NICU at Memorial Health in Savannah, GA after she was born due to her weight. It was there they noticed her oxygen levels were low, in the 80s...
Dayna Bouchard
Hello my name is Dayna and this is my story.
I am 26, almost 27 years old. I was diagnosed with 22q at a very young age. I had a hole in my heart as well as truncus arteriosus...
Viraaj
Hi all,
Our son Viraaj has 22 Q deletion.He was born in India and at 40 days of birth suffered seizures due to low calcium levels. He was hospitalized for 11 days. That is the...
Ellie Mae
Meet Ellie Mae Williams. This year has had tremendous ups and downs for her. We live in Miami-Dade, FL and Covid has taken its toll on our city. We’ve had two family members pass...
Robin Gramke
I am a Nurse in the frontlines working to fight against COVID19 and I have 22q11.2 DS. I’ve been a nurse for 11 years and in the health care field for 15 years. I have never seen...
Cohen Crooks
My name is Paige Crooks-my husband and I have 6 year old boy/girl twins and a 3 year old son, Cohen, who has 22q. At 28 weeks I had my routine ultrasound. Baby looked good,...
The Autrey Family
My name is Alyah and this is my 22qt Jonah! Our 22q journey began at my 26 week ultrasound when we learned the heart breaking news about our baby boy, we heard the words “He has a...
The Podoll Family
Hi! My name is Joellen and this is my daughter, Maryn.
Our journey with 22q began before Maryn was born. At my regular anatomy scan, the ultrasound tech couldn’t get a great...
Cooper Schummer
Hello! My name is Emily and this is my son, Cooper.
Our journey with 22q began when Cooper was just 2 weeks old. When I was pregnant with him, ultrasounds showed VSDs (holes in...
The Kovarik Family
One of the questions I am frequently asked is if I knew Ryleigh was going to have 22q. The answer is, No. I had a completely easy, healthy, low risk pregnancy and even easier...
The Lopez Family
My name is Moises Lopez, I am 34 years old, born in Chile. I moved to Toronto with my family in 1989 then moved to Montreal in 2008.
I met my wife online in 2004 on our favorite...
Kati Scheid
Meet Kati.
She is one of our young adults with 22q. She attends Northern Arizona University and is a return applicant for our Riley Dempster 22q Family Foundation Scholarship....
Lynnox Jo
This is my sweet 22QT Lynnox Jo! She was diagnosed when I was 33 weeks pregnant and born at 35 and is now 7 months old! She was born with Tetralogy of Fallot with VSD, a calcium...
Michelle Herm
Hello my name is Michelle. I am 25 years old. I was born and raised on Long Island New York and moved to Texas after I graduated college. I was diagnosed with 22Q at 3 weeks of...
George Smith
George was 3 days old when he turned purple on us twice. After going through appointments with Ear, nose, and throat doctor he was referred to plastic surgery and a sleep study....
Axton
My husband, Andrew and I, married in 2012. Our oldest son, Aldyn, was diagnosed with autism shortly after, so we decided to hold off a bit on growing our family. In 2013, we...
Elijah Boerner
The day Elijah was born I just had this feeling that something wasn’t right. I told the Pediatrician on the Delivery unit that Elijah’s breathing sounded funky and I was reassured...
Gracie Chavez
I was diagnosed with 22q at the age of two, but we knew it as Velocardiofacial (VCF). Over this past year my family and I have discovered so much about it, like a new name and...
The Lefler Family
Zoey was born February 22, 2014 at The Children’s Hospital of Philadelphia with DiGeorge Syndrome and multiple heart defects, Interrupted Aortic Arch Type B, Large VSD, Aberrant...
The Millers
One of the first questions people ask when they hear about Lila’s 22q Deletion Syndrome is how we discovered her diagnosis. I’ve been reflecting on a lot of things lately, and I...
The Kumar Family
Niam is loving, adventurous, and outgoing by nature. He is also a compassionate, energetic, and curious child. Some of his favorite activities these days include exploring the...
Jackson Drake
Meet Jackson Drake.
Jackson was one of the 2018 Riley Dempster 22q Family Foundation Scholarship winners! We recently checking in with Jackson to see what he's been up to after...
Drew Yost
Meet Drew Yost!
He's one of the 2018 Riley Dempster 22q Family Foundation's Scholarship winners.
Drew, a St. Louis native just completed his first year at a specialized program...
Brett Pevey
Brett was first diagnosed with 22q when he was 9 years old. Although before hand, there were many things that indicated he was going to have difficulties. At 3 months of age,...
The Rays
Kinley’s heart defect was identified when she was two days old. We had no previous warning. She was transferred to the nearest NICU and additional testing was performed. She was...
The Moccos
This is Easton. He was brought into our lives by way of emergency C-Section on May 12, 2017. Soon after Easton's birth he was placed in the infant special care unit at Sentara...
The Chambers
Emerson is such a sweet, funny, outgoing, music-loving, dancing queen. She is full of sneaky jokes and has a personality as big as any room she is in. Peppa Pig is her absolute...
The Labat Family
Meet Christy Labat. Check out her blog here and read her entire story as to how she grew up living differently than most and getting a diagnosis at the age of 24 years old :...
Meet The Dormans
Our first child Avery was born on Oct. 1st 2011. She was diagnosed with bilateral clubfoot and a small VSD. During that time we could not link these conditions through family...
The Westlunds
I always knew Peyton was different. From the moment he was born he just acted different and we reciprocated appropriately. Of course then we just thought it was because he was the...
Meet The Thompsons
Aaliyah is a vivacious blonde charmer. Born October 22, 2012 in Philadelphia, PA. Aaliyah loves music. She loves to sing and dance. She ADORES Elsa from "Frozen" (or anything...
The Weniger
Carter was born on July 13, 2016 after a pretty scary pregnancy. I had a subchrionic bleed at 8 weeks and a partial placental abruption at 29 weeks but thankfully he made it full...
Meet the Weiners
Lucas is our 14 year old 22qtie. Lucas loves WWE, nascar and his best friend and service dog, Rafael. Rafael goes to school with Lucas every day.
Lucas was born prematurely at 35...
Meet Alex!
Here is our story of our beautiful son Alex.
He was born 6 weeks early due to complication with me. Blood pressure and kidney issues to name a few. We learned he presented with a...
The Hogans
Collins is our 6 years old daughter. Our journey started when our daughter was in utero. I was tested for everything while pregnant, and had an emergency amniocentesis while...
The Olsons
After what seemed to be a normal pregnancy and a very quick birth Caleb was here. He was exactly perfect and so loved. As we were preparing to take Caleb home to his big sister...
Hannah Schilling
My name is Hannah Schilling. I’m 21 years old live in USA.
I was diagnosed at 4 days old with 22q because of my heart defect. I have had 4 open heart surgeries and I have had 23...
Nadia Zomorodian
My name is Nadia Zomorodian , I am 27 years old and was diagnosed with 22q at age of 2. I have had heart surgery when I was a week old, the same one that was Jimmy Kimmel's son...
The Busch Family
We were living with 22q before anyone had heard of 22q. Our son Mike is now 35 years old. He was born in 1983, 10 years before the test to identify the deletion was developed....
The Keir Family
You may have recently seen this video of the love between two brothers, one with 22q11.2 Deletion Syndrome. It was made by the Keir Family to show the love and special bond...
The Simmers
Our son Jordan was born early at 33 weeks. Our story with 22q begins with his time in the NICU. During his time in the NICU it was determined that Jordan didn't have any calcium...
The Bredwells
Addilyn was born in November 2016. After a completely healthy pregnancy and no prior knowledge of Addilyn’s health conditions, she was diagnosed with three heart defects,...
The Wagner Family
We both can say we’ve really become who we were supposed to be, thanks to 22q. More patience, understanding, open hearts and open minds. Before 22q, we would try to be...
The Buchholz Family
We are the Buchholz family and here is how our 22q journey began. We have three children and our youngest daughter is Kristina. She is now twenty-eight years old, currently in...
The Hart Family
How has 22q changed your family's life for the better? Coralean has showed us strength. From infancy she’s been a fighter and always proves she can do the things we question....
Becca
My name is Becca and I am 24 years old. I was diagnosed with VCFS/22Q at age 2. My parents noticed that I was walking late and I needed speech therapy as a kid. Social aspects of...
The Polivka Family
My son, Dexter, was diagnosed with 22q before he was born. At my 20 week ultrasound we were notified that there were some heart defects and other anomalies. We were sent to...
The Serban Family (Foundation Director, Katie Chiet)
We learned that "something was not right" with our firstborn at about 32 weeks gestation, but it wasn't until he was here in our arms that we could start forming the picture. ...
The Garcia Family (Foundation Directors)
When Lindsey and Ryan found out at their 20 week ultrasound that their child was going to be born with 22q11.2 deletion syndrome, everything changed in their world. They were...
The Hagan Family
Shannon was 5 years old when she was diagnosed with DiGeorge Syndrome/22q. Shannon had 2 very big challenges. She was born with Tetralogy of Fallot, a common congenital heart...
The Yost Family
How old was Brooklyn when she was diagnosed? - We were blessed to receive our diagnosis of 22q by amniocentesis in utero.How has 22q changed your family's life for the better? - ...
Amy Maiorano
How old were you when you were diagnosed with 22q? - I was 10 years old when we got the diagnosis. My parents were worried about me not meeting milestones and knowing I was...
The Lee Family
How old was Emma Kate when she was diagnosed? - Emma Kate was one month shy of her 2nd birthday. We had a follow up with an ENT following her open heart surgery in 2012 due to a...
The Bourg Family
An update on Connor...One of the most terrifying things a parent can hear is that there is something “wrong” with their child. As a young, girl I dreamt of the day I would have...
The Griffiths Family
How old was Adell when she was diagnosed with 22q? - She was 6 1/2 months old.How has 22q changed your life for the better? - Having a child with 22q has helped me and my husband...
The Nordmeyer Family
UPDATE as of 9/20/20:Now as Nate enters middle school, it is difficult to watch the gap with his peers widen—in his physical size, maturity, social skills, athletics... We know he...
The Flax Family
How old were you when diagnosed with 22q? - After my heart surgery when I was 5 months old.How has 22q changed your family for the better? - 22q has changed my family's outlook on...
The Beasley Family
How old was your son when he was diagnosed with 22q? - Owen was FINALLY diagnosed just shy of his first birthday. Those 9-10 months were the hardest of our journey. Owen had...
The Gassman Family
Lilly, when were you diagnosed with 22q? - I was born with 22q (She is now 19 years old).How has 22q changed your family for the better? - 22q has made my family better because we...
The Coates Family
How old was Rachel when she was diagnosed? - Rachel was 6 months old and it was just after having a large VSD repair. It was almost an afterthought, one doctor just happened to...
The Peterson Family
How old was Charlotte when she was diagnosed? - She was a little over 8 months old. I had been pushing for services/intervention for about two months before her cardiologist...
The McClellan Family
When was Maren diagnosed with 22q? - Maren was diagnosed when she was 15 months old (she is now 12).How has 22q changed your life for the better? - So many things have happened on...