Faces of 22q
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ALABAMA
EMMA GRACE - 6 YEARS OLD
This is Emma Grace, she was diagnosed with 22q March in 2011 when she was almost 5 years old. Her father and half brother also have 22q. She is now almost 7 and has had nine...
MADDOX – 6 YEARS OLD
Maddox was born in July 2007 and was diagnosed with 22Q at the age three, thanks to the suggestion from his Speech Therapist, Jessica Montgomery, at Helen Keller in Sheffield, AL...
ANDREW
My son, ANDREW, was born June 2,1987, in Dallas, Texas. The pregnancy was normal and induced on the 2nd. Doctors detected a murmur at birth, and Andrew was whisked off to NICU. He...
LANDON – 7 Years Old
Landon was born in December 2007 at Springhill Medical Center. An hour or so after delivery, our precious boy was wheeled into our birthing room in and oxygenated incubator. The...
Alabama
OLIVIA
Olivia Addison Barnes was born July 26th, 2005 weighing in at 6 lbs. 4 oz. The nurses and Doctors all gushing over her said that she looked like the picture of health. On the...
ANDREW
Our son Andrew has Digeorge syndrome/22q deletion. He is so strong and tough. He is 8 yrs old and going into the 3rd grade. He makes A-B honor roll every year and plays football....
LYNWOOD
Lynwood was adopted by me in 2009 in New York City. We recently moved here to Alabama almost two years ago. He was diagnosed when he was a baby. He had his first surgery before I...
JENNIFER
I have a beautiful little girl her name is Jennifer. She is a miracle. She has 22q Deletion Syndrome, VCFS, Club feet, VSD. She had a Vascular Ring Repair, cleft palate and...
ARIZONA
ABIGAELLA - 7 YEARS OLD
Abigaella (Abby) was born in March 2006, she was 5 pounds 11 oz. Abby had health problems from the very beginning, but no doctor could determine the cause of the problem. When she...
FERNANDA
Our beautiful Fernanda was diagnosed with DiGeorge Syndrome when I was 9 months pregnant. At 3 days old she had her first heart repair surgery, she stayed in the PICU & NICU...
BAILY
Bailey was born in December 2004 and came home from the hospital as a healthy little girl. At 2 weeks old her doctor heard a heart murmur during a routine office visit and we were...
CHARLIE
The moment our first son, Charlie, was born we were almost instantly puzzled. He was almost 2 weeks early, just 5 lbs and he failed his newborn hearing screening. He also had...
California
STEFANI
My Stefani was born 3 months premature, weighing 3 pounds, 5 ounces. She struggled throughout her life, but the many doctors she saw never put the puzzle pieces together and...
JACKSON
Our story is a bit unique because me and my son both have 22q11 deletion syndrome. I, however, did not know until after my son was born. I grew up having some special needs,...
Chikao
My grandson Chikao was diagnosed at age 14 with hypoparathyroid syndrome. Di George Syndrome q22 deletion. He is now 24 years old. It has become a challenge to get help for his...
Rhyelle
This is our beautiful rainbow baby, Rhyelle. I had a normal pregnancy and birth. When Rhyelle was born we were all shocked by her size. She was 6lbs and 18inch. Not expecting a...
AVA
Ava was diagnosed with 22q two weeks after birth while still in the hospital recovering from her first open heart surgery. During her first two years of life, we had the calcium...
CALIFORNIA
JENNA – 13 YEARS OLD
Jenna was born in December 1999. I had a normal pregnancy, she was induced 10 days early for fear I would have a very quick labor. While in labor, Jenna was holding onto the...
AIDAN - 8 YEARS OLD
Aidan was born in November of 2004. Doctors at UCSD and Rady Children's first thought he had lung issues because his oxygen was so low, but he was diagnosed at 10 days old with "...
MICHELLE LEIGH PADILLA
My name is Michelle Leigh Padilla. I was born with a congenital heart defect called severe teratology of fallout. I have had three open heart surgeries, two sinus surgeries, ear...
SONIA ~ 2 YEARS OLD
After freezing the adoption process when we found out we were pregnant and then losing that little girl we decided it was time to finish the adoption process.We had our last...
AYVA – 23 MONTHS OLD
UPDATE as of February 2020This was written when Ayva was two years old and she is now eight years old. A lot has changed since then. She was exited from speech therapy once she...
OLIVIA
We found out about Olivia’s deletion through amniocentesis. She is one of the cases that is not hereditary, it was just a genetic anomaly. So far the main issues associated with...
COLORADO
LAUREN – 16 YEARS OLD
My little 22q-t is now sweet 16! She was diagnosed at age 4, after many years of "issues". I had a gut instinct telling me that something was not "right", only to be dismissed...
Colorado
JAIDEN
On March 18, 2010, I went into preterm labor with my little man. They had an ultrasound done and told me he was disformed and I would need to get my labor stopped and be...
CONNECTICUT
AVA
Our story is like many others. At 20 weeks we were told something on our ultra sound did not look right. We were then advised to see a specialist at UCONN Medical Center. Soon...
DESIREE – 13 years old
Desiree was diagnosed at age four from the FISH test. She had trouble crawling and had Birth to three services. She is a beautiful young teen. She likes video games etc.. Lately...
FLORIDA
MADISON
We met our little angel when she was already 6 weeks old. She had already had her first open heart surgery and her birth-mom was sure that she was not going to be able to care for...
FABIEL ~ 5 YEARS OLD
I am the mother of 3 wonderful boys Danny 17, Fabiel 5 (22q11), and Fabian 4. Fabiel, was born full term by C-section. Hours after his birth I notice he was shivering. I thought...
PEYTON
I had Peyton Decemeber 23, 201 — she got rushed a few hours after I had her to Lawnwood Hospital and the met-lifted to Miami… they found she had a interrupted aorta that was also...
RACHEL
Rachel was born with a hole in her heart. At 6 weeks of age, it was repaired and she was declared in good health. As she approached her first birthday, we noticed she wasn’t...
SEAN
Sean was born December 26, 2004. His first day of life was a very rough start. We found out that Sean was born with a Restriction to the Aorta, several Heart Murmurs, low blood...
KRISTINA
Hey 22q community! My name is Kristina; growing up I was constantly sick and no one could figure out why. When I was 12 I had my first seizure, then I had my second seizure at 15...
CHLOE
We were ecstatic to be having a baby girl! Our Chloe was born on December 18, 2009, just one week before Christmas. Everything seemed to be perfectly normal until she continued to...
LAUREN ~ 5 YEARS OLD
My little bean has 22q11.2 deletion. We found out she had something wrong during a routine ultrasound at 25 weeks. My world was turned upside down. They found her heart defect of...
Florida
ZA’NIYAH
I have been blessed to be Za’Niyah’s mommy. She is the most precious gift ever given to me. When I was 23 weeks pregnant I went for an ultrasound. They found that she had a hole...
JASMINE
Hi, I am a mommy of child with 22q her name is Jasmine she is 11yrs old. She was diagnosed a little over a year ago after many hospital stays and heart operations to repair her...
PHILIP
I my name is Philip I have lived most of my life not understanding what was happening to me. I did not find out that I had 22Q until I was 24 years old. Thanks to Children’s...
GEORGIA
BRYCE
Bryce was born Sept. 2, 2005 in Rome, Ga which is about an hour away from Atlanta. I had an uneventful pregnancy and delivery. We were actually getting ready to leave the hospital...
NATALIE
Natalie was a beautiful 6 lbs. 7 oz. baby girl born in April of 2001. She had a few “choking” episodes at birth but nothing that sounded any alarms that something was wrong. At 12...
DYLAN
Hello we have a son Joseph Dylan Shead, born 05/05/1998. He is now in 8th grade. He was diagnosed with q22 when he was 6-11 days old. He had a congenital heart defect and also...
RILEY
I have high blood pressure and am in my mid-thirties so I was considered high risk when I was pregnant with Riley. I had more sonograms than I can count so when Riley was born in...
LINDSEY
I’m Lindsey. I’m also the little girl on the 22Q foundation website. Right now I am 16 about to be 17. I had my surgery at 6 months old. I have tretrology falout and I then had...
IAN
This is Ian with his awesome service dog, Roscoe. Ian is an adorable boy who loves to jump, hang, climb and play like any other energetic 7-year-old. Ian was diagnosed with autism...
MEGAN
Megan was diagnosed with 22Q11 Deletion at age 10. Due to 22q Megan has a speech problem. We took Megan out of the public school system last year and placed her in a small private...
WILL
On May 5, 1992 was one of the happiest days in our lives! Our son, Will made his debut that was quite memorable! Everything was great after delivery until one of the nurses came...
Georgia
MADISON
As a mother to two healthy children already, I never expected anything to be different with a new baby. Madison showed us that things don’t necessarily go as expected.Finding out...
FONTELLA
My daughter, Fontella was born November 6, 2001 as a healthy little girl. It was not until the next morning, when the nurses relized that she was turning blue that something was...
CATHERINE CLAIRE
11 years! I can not believe that it has been 11 years since our “trip to Holland\” was born. As matter of fact in just a few days it will be the anniversary of exposure to 22q!...
JULIANNA
Julianna was a beautiful baby girl who seemed to take a little longer to reach her milestones. We did not suspect that Julianna had a genetic defect at all; up until that time she...
GEORIA
LANDON BLAZE
My son, Landon Blaze was born in September of 2012. He was only 6lbs 10oz. The day we found out he was diagnosed with 22q or DiGeorge Syndrome was on June 23, 2013.That was one of...
IDAHO
BRODY – 2 YEARS OLD
Brody was diagnosed with 22q after two years of sickness. He constantly had ear infections, pneumonia, bronchitis and many other little bugs. He always has been about six-nine...
ILLINOIS
ALEX
My son , Alex, was born on Dec 3rd 2001. At 7 months preganant I learned that Alex had a congenital heart defect ( at that time was told it was Truncus arteriosis) and later an...
OLIVIA
Olivia and her twin brother R.J. were diagnosed at 18 weeks with serious complications. Olivia had no fluid which made it difficult for her to move and measure her growth. Doctors...
EMMA - 3 YEARS-OLD
Emma was born in June 2011. When she first came out her umbilical cord was wrapped around her neck and she was screaming. I started to freak when the doctors wouldn't let me see...
ANTHONY
Anthony was born on June 29th, 2007 full term. We had found out on our 20 week ultrasound that Anthony had a heart defect which then prompted our amazing OB to order a more in...
CAMDEN
Camden, 4-month-old son of Michael and Rachael of central IL, was born with a rare chromosome defect known as 22q11 or DiGeorge Syndrome like many others here. Camden spent the...
JOSEPH
Joseph was born June 24, 2008. Around nine months of age, we began to realize he was delayed in his milestones. We reached out to early intervention for assistance. Through our...
OLIVIA
I found out at 34 weeks pregnant that my unborn daughter had truncus arteriosis. When Olivia was born she had a small (not fully formed) right ear and most noticably assymetrical...
MICHAEL ~ 1-1/2 YEARS OLD
Michael was born on November 11th 2011. He was a full-term baby and weighed 6.5 lbs. they said he was healthy. Everything went well and we were sent home the very next day. Things...
OWEN
Our 13 month-old son Owen was just diagnosed yesterday and we are overwhelmed to say the least. We are so grateful for all the stories on this page. It is so nice to know we are...
AUSTIN
Austin blessed our lives 9 weeks earlier than expected. He was born at 31 weeks, 4 lbs, 4 oz and 15.75″ long. He was taken to the NICU where he spent the first 2 months of his...
JUAN
Juan was diagnosed with 22q11 Deletion Syndrome shortly before Thanksgiving 2008. He was 3 1/2. Most people would have been devasted by the news. I was happy to finally have a...
ADRIAN
Adrian was diagnosed July 2012 right after he turned 3 years old. His father was diagnosed shortly after at the age of 42. He has been in out of hospitals since he was 4 months...
ANTHONY
Anthony was diagnosed with DiGeorge Syndrome at birth. By the time he went to school the health issues were minimized (T-cell count is the only major issue). Anthony was given an...
RAMONA MAE
Our daughter, Ramona Mae, was born November 26th, 2006. Her birth was a much anticipated and joyful event. She was full term, weighed 7lbs. 5oz. and was pronounced healthy at...
JAXSON - 1 year old
Jaxson was diagnosed shortly after his first open heart surgery at six days old. They discovered he did not have a thymus and later genetic testing confirmed he had 22q11.2...
MIA – 8 MONTHS
Our story began with wanting to know if our baby was a boy or a girl. We spent a few extra bucks to see if our second child would be another girl or if we would get a boy instead...
ANDY
My second pregnancy was announced at the 30-week ultrasound to be twin boys. We were thrilled and scared. After many pre-term labor scares and hospitalizations, the twins were...
JAXSON – 3 MONTHS OLD
Jaxson was diagnosed with a CHD at two days old, he had open heart surgery at six days old to repair his interrupted aortic arch and VSD. We later found out that he also was...
KYLIE
Kylie was born Sept. 25 2008. It was the best day of our lives!! She got a thumbs up from all the doctors for being healthy. Shortly after she was born, we noticed her hands and...
EMMA - 17 Months old
Oh how much Emma loves the outdoors!!! She was born in July and full of life. We knew something was wrong since she was in utero but we did not know what exactly. Doctors noticed...
Illinois
ERIN
Erin was born by C-section after a problematic pregnancy. She appeared to be a healthy baby, but had a weak cry at birth. Nurses in the neo-natal unit detected a strong heart...
JOHN MARK
Our 26 yr. old son, John Mark, was born in 1987 with Spina Bifida, hydrocephalus, club feet, two holes in his heart and a soft cleft palate that was open. He was immediately sent...
TAYLOR
Our daughter was misdiagnosed and had cardiac arrest at a week’s age.She was in the hospital for the first two months of her life and in and out of the hospital up to the age of...
MAEVE
Maeve is our youngest child, and was diagnosed with 22q.13 (Phelan McDermid Syndrome) when she was 2. She is a happy, high energy bundle of joy who loves to run around, play with...
DANNY, ANNA AND MOM
I have a long and detailed story so I’ll try and keep it to the point.I had Danny in 199l5; he spent 31/2 long weeks in NICU couldn’t eat and swallow without choking or turning...
ADDISON
Where to Begin? November 29, 2009 We were getting ready to have Thanksgiving dinner that night. We got to my mom’s house about five minutes from ours and just felt crappy. Couldn’...
NICHOLAS
Our son Nicholas was born almost 4 weeks ago. We already had 3 children, and we were not planning on having any more. Then unexpectedly we found out we were having one more....
SYDNEY
Sydney was just five days old when she had her first heart surgery — a surgery that would only be a temporary fix until she was strong enough to endure a partial transplant of a...
BLAKE
Our son was diagnosed with DiGeorge in May 2012. Here’s his story….Blake was born on February 25, 2004. He was 8 weeks premature and weighed in at a whopping 3 lbs! His troubles...
BOBBY
Bobby was first diagnosed with 22q11.2 deletion syndrome in May 2012 at the age of 3 1/2 years old. Bobby was having issues with speech and was becoming frustrated with the fact...
NORA
When my daughter Nora was born, the only visible abnormality about her was a misshaped right ear. She was a very sleepy baby, needed to be woken up for feedings. About one week...
NATE
Nate the Great!! At 3 1/2 years of age, after a visit to the ENT for PE tubes, I was shocked to hear the doctors suspicion of a 22q11 diagnosis. After confirmation, we had our “...
ABIGAIL ELIZABETH
Our daughter, Abigail Elizabeth, or Abby as we call her, was born on December 15th, 2003. After years of battling infertility we could not wait for her to arrive. Labor was...
GABRIEL
Gabriel joined us on October 17, 2006 , 5 weeks before his due date. As far as we knew everything was fine, he had to be delivered early due to my high blood pressure. Immediately...
LAURA
Hello my name is Kathy my Daughter Laura was born with 22q. We did not find out she had it until after she had been home. After they tested her they tested me and told me i had...
Indiana
Josiah
Josiah was born December 4, 2017 at 7 lbs 11 oz and 21 inches long. It was an induced labor, but as soon as he was born, he was whisked to the NICU. He was having breathing and ...
ANELISE JOSEPHINE MILLS
Anelise Josephine Mills was born March 15, 2007 in Cincinnati, OH. Anelise is my first and only child to date. Finding out I was pregnant was exciting and scary all at the same...
BELLA
Hello, My name is Lisa. I have a 22-month-old daughter named Bella. Bella was diagnosed with 22q Deletion Syndrome a short time after birth. Bella was ready to come home from the...
INDIANA
CATALYN - 15 MONTHS OLD
This is our daughter Catalyn Alexis, she is now 15 months old. When we found out we were expecting another child we were so excited and hearing, after two boys, that she was a...
ANELISE - 6 YEARS OLD
My Husband and I found out that Anelise was going tohave a major heart defect before she was even born. To sum it upwe were terrified. The first thing that came over me was that...
CRAIG
Craig was born in September of 2008 after a relatively normal pregnancy. We knew he had hydronephrosis but that was all. I knew from the moment I met Craig that there was...
OLIVIA
At just 2 days old (still in the hospital), I began experiencing significant respiratory problems and turned a disturbing shade of grey. Mommy, Daddy, and the doctors were all...
IOWA
ADDISON
Addison was born on May 4th, 2007. She was a full term “C’ section baby. At first glance like most births she appeared very ‘normal’. She did however, make some strange squeaking...
TAYA
Taya Grace was born on May 1, 2009. We went home 3 days later with a healthy baby. We soon found out that Taya had many things internally going on that we didn’t know about. 17...
ENJELICKIAGH AND REBEKIAGH (IDENTICAL TWIN GIRLS) - 16 months old
UPDATE 2018: The girls are now 5 years old and going to be starting school. They are still struggling with their speech but otherwise have been doing great. It has been a fun ...
Iowa
KYLA
My husband texted me and said “go to cubs.com.”It’s December – baseball is over for the season. Why?“Ryan Dempster’s daughter has DiGeorge.”My ears perked right up. Our daughter,...
James
When I was 31 weeks pregnant, I went in for a routine ultrasound with a new ob. They brought me back to a waiting room where the doctor came in to talk to me. They saw some...
KANSAS
ANDREW AND CALEB
Andrew was born in July, 2003. The doctors rushed him to a local childrens hospital, where he had open heart surgery seven days later. The surgeon repaired his heart defect called...
KENTUCKY
ETHAN
We found out May 2009 that we were going to have a child together. We were so excited! Well I had a very hilly pregnancy it had started in June. I had started to bleed it wasn’t...
Kentucky
LINDLEY AND ALEX
Hello! My name is Stephanie and I have two children with the 22q deletion. There is little information on the deletion. Due to the lack of information, I frequently use the list...
Louisiana
CONNOR
Connor Philip Bourg was born November 1, 2010 via scheduled C-section. There were little things along the way that just didn’t seem right, but none of these were disturbing enough...
MAREN
Maren was born on June 18, 2004. Right away, there were signs that something wasn’t right. Maren was unable to nurse and she turned blue and had nasal regurgitation during bottle...
LOUISIANA
EVAN - 12 YEARS OLD
It was the summer of 2000. Clint and I already had a beautiful, almost two year-old little girl, Hannah. But the Lord decided that it was time for us to expand our family. When I...
LOUISIANNA
BENNETT
BREAKOUT QUOTE:“I felt isolated and alone because none of our family or friends had ever heard of 22q. I decided early on that I wanted to be an advocate for Bennett and for...
Maryland
Katie
My name is Katie. I was born a preemie at 34 weeks. My mother knew I wasn’t breathing, so when she went to the hospital, they rushed a c-section. My apgar was 1:6 and I failed the...
MARYLAND
DUNCAN - 2 YEARS OLD
We were living in Hawaii when I became pregnant with our second child. As we inched closer to the 20-week ultrasound mark, I became very uneasy, thinking something was wrong with...
Massachusetts
MONICA
Monica was born without the ability to swallow, spent her first 6 months in the hospital and had a tracheotomy and feeding tube until she 14 years old. She was diagnosed at 2...
COLLEEN
My name is Colleen Crowley. I am 21 years old and I also have VCFS! (or 22q11.2). I live in the Boston area and yes, I am a HUGE Red Sox Fan! I was diagonosed with DiGeorge...
AMY
Hello, I am 58 years old and was just diagnosed with DiGeorge Syndrome in January of this year. As a kid I had a few problems that were dealt with but all on there own. For...
MASSACHUSETTS
REANNE – 9-1/2 YEARS OLD
Our story started from when I was 16 weeks pregnant I got sent in for a lovely level 2 ultra sound due to medical problems in the family. It was at that basic appointment that we...
AMY ~ Adult
Hello, I am 58 years old and was just diagnosed with DiGeorge Syndrome in January of this year. As a kid I had a few problems that were dealt with but all on there own. For...
MICHIGAN
ANDREW
I had a very easy pregnancy. All ultrasounds and prenatal checkups showed a healthy baby boy. My labor wasn’t too bad and on November 24, 2009, Andrew was born at 7 lbs, 7 oz, 21...
SANIYAH ~ 10 MONTHS
Your Story: Saniyah was born August 1, 2012. She was a full termbaby that was said to be pretty healthy so her 49 days in theNICU was a surprising to us. After running a number of...
LEVI - 18 years old
Hi, I am Levi, I am 18 years old, and I have 22Q11 deletion syndrome. I was born with a congenital heart condition called Truncus Arteriosis Type II, and a few days after I was...
Michigan
MAKENNA
My daughter was born August 7, 2010 I just found out she has DiGeorge Syndrome. She doesnt seem to have much of the symptoms. She sleeps alot, she might have a narrowing in her...
AUBREE
Aubree was sent down from heaven on June 18, 2008! When I would hold her I’d notice her little hands and feet were SO cold all the time. They took her to the NICU and the next...
IAN
Ian is 9 years old and was diagnosed with Microduplication 22q11.21 December 23, 2010. He was the third in our family to be diagnosed. His younger sister has it also, and his...
LANEY
Laney was diagnosed with Microduplication 22q11.21 on June 25, 2010. That day changed our lives forever. She has struggled since birth, and after five years, we finally had a...
ISABELLA
I have a father, three siblings, myself and my daughter who all have 22q deletion VCFS digeorge syndrome.Testing of not only the child but of both parents is very important in...
MINNESOTA
JACOB
Our son Jacob was born 10/01/1997, full term. It was not until his birth we realized something was wrong. Jacob was flown to St. Mary’s in Rochester, MN, right after birth, where...
Minnesota
GIACOMO
Hello, My son who is now 3yrs old was born with 22q11 DUPLICATION. At first we thought he was a healthy baby boy, but after 2weeks of vomitting through his nose, we knew something...
MAKENNAH
MaKennah was born May 2, 2008 at 8:52pm. Shortly after birth she was given and clean bill of health and we were released 2 days later. Everyday she had bright purple feet and the...
SARI
On March 24, 2011 I received a call saying, “a 7 week old baby girl just came available for adoption… She has DiGeorge Syndrome.” I was surprised when my husband said “Let’s get...
THOMAS
I had polyhydramnios and failed 3 inductions, and was one week past the due date when Thomas was born on September “22,” 1997 via C-section. As soon as I saw Thomas across the...
MISSISSIPPI
KIMBERLY
I am 30 years old and was born with the heart condition called tetralogy of fallot. I have had 4 open heart surgeries. my first 2 was to re pair the holes, my 3rd was a valve...
Missouri
GAIGE
I am not going to talk about the complications he has gone through with 22q because that is not who he is. I want to tell you who my son is. He is one of the most amazing people I...
KENLIE
After a totally healthy uneventful pregnancy Kenlie was born at 39 weeks on December 18th 2008. She was a beautiful little baby who looked perfectly healthy. The night she was...
AMBERLY
Amberly was born at 36 weeks via emergency c-section weighing 6 lbs. 1 oz. She was very blue and her doctor could hear a murmur. She was refered to Children’s Mercy cardiology...
ROBERT
Robbie is the light of our life! He has been with our family for over 2 months ago and is a happy loving sweet little boy. On May 20, 2012 we received a message from our adoption...
MISSOURI
TEDDY
Teddy is our beautiful, tough little man, that is now 8 months old!! Teddy was born on June 24th, 2009. He was diagnosed with DiGeorge Syndrome one week later. He has a major...
ZACHARY – 12 years old
Looking back, the signs were all there... However it was not until he was 10 that Zach finally got the diagnosis. He was a full term baby weight 5 lbs. 8 oz. When taking his...
MARK
Mark received his 22q diagnosis prenatally in September 2000. Ultrasounds had shown TOF with Pulmonary Atresia, lung cyst and club foot. I had the FISH test three weeks before he...
NEBRASKA
PAXTON - 9 MONTHS OLD
Paxton was born in April. She was the picture of perfection! 7lbs 2 ounces 20 inches long and tons of dark hair!! Everything was going great until she failed the congenital heart...
SAXON - 18 YEARS OLD
Saxon was born with TOF, we were told he wasn't going to live. We had an option of surgery but he was only given a five percent chance of making it through. He is now 18 years...
JEFF
Jeff was born on November 23, 1992 and we immediately knew he had a cleft of the soft palate and low calcium levels. We were told that nothing else was wrong with our son. We took...
Nebraska
SAMUEL
Sam came early! His announcement said, “He just couldn’t wait!” I was 32 weeks along in my pregnancy and my water broke! I held off 2 weeks in the hospital before going into labor...
TANNER
Tanner diagnoses was not made until he was 11 1/2 years old, but the signs and symptoms were there since birth. As an infant he suffered with nasal regurgitation, repeated...
NEVADA
DAVID – 4 MONTHS
David Alexander was born in June of 2013. A day after he was born, the doctor order an ultrasound to check his heart. When he was in the belly they never got to see his heart...
RYDER - 9 MONTHS OLD
My son Ryder was born in April 2013. He has VSD, pulmonary artresia, TOF & DiGeorge Syndrome. I found out he had a congenital heart defect when I was 18 weeks along. I...
IRELYNN – 6 years old
My daughter, Irelynn, was born in December 2007 and wasn't diagnosed until the age of two years old.
Irelynn has a perfect heart which we are grateful for everyday! She has a lot...
SOPHIA
Sophia was born full term and the only complications was polyhydramnios during pregnancy (too much amniotic fluid). Soon after birth she was diagnosed with failure to thrive...
NEW HAMPSHIRE
PIPER
Piper hit 3 months old and just stopped growing. She was 20 days old and in the hospital for a fever of unknown origin and she would projectile spit up out her nose always. She’s...
CODY - 6 MONTHS OLD
When I was pregnant with Cody, everything was completely normal and all ultrasounds showed a healthy baby boy. My labor was quick and easy and my little superman arrived just...
NEW JERSEY
MORGAN
Morgan was born full term in October 2006. Just shortly after birth, one of the nurses noticed her turning blue and choking on her feedings. She went through several tests and was...
KATE
My daughter Kate was born full term on April 29 and was deemed at that time “perfectly healthy.” Within a week, they heard a murmur and we were told she had a small VSD that may...
LANDON ~ 9 YEARS OLD
Our son Landon is a kind hearted handsome young boy. He is thesecond child out of my three sons. I always knew there was somethingamiss with him, but didn't know what it was. As a...
New Jersey
LOGAN AND JONATHAN
Our personal story began a little over a year ago when I had an ultrasound at 12 weeks for our 4th pregnancy. I have never been more petrified than the moment the tech left to...
NEW MEXICO
EVA
Eva Jacqueline was born in June 2006 (Flag Day) in Albuquerque NM. Born to two active duty military members, Eva was the second of our two beautiful girls. Eva was born four weeks...
NEW YORK
TJ
TJ was born by C-section in August 2002. TJ was also born with Tetralogy of Fallot. He was tested for DiGeorge Syndorme on his third day of life. (the heart defect is sometimes...
New York
KEON
Keon was my third pregnancy, and throughout it was the hardest pregnancy. At 24 weeks my fundal height was measuring a 40 week pregnancy, the doctor insisted I was having a large...
Emma & Jenna
These are my lovely twins. They were 2 years old when I first saw a genetic doctor at upstate hospital [in New York]. He suggested we get a genetic test because my girls were...
DOMINIC
Dominic is my fourth of five children. He was born full term and didn’t seem to have any problems. The first time I noticed something was not right was when I fed him. As he was...
BOBBY
Bobby was born on May 24, 2010. When he was born, the pediatric heart doctor stated he had a loud murmur being caused by a small VSD. She indicated that this happens a lot and...
LANDON
Landon is a very sweet 8 month old boy. He has been through a lot since birth, but continues to wake up with a smile every morning. March 30, 2011 Landon was born at 8 lbs 3.7 oz...
JADIEL
My son Jadiel has been a blessing in my life and to our family. He has been through 6 surgery’s but he has recovered so well. I’m so proud of my little soldier. He was born at 34...
ASHER XAVIER
Hello, my son was diagnose with 22q, he is a year old, he was born 23 weeks gestational,he weighed 1 Lb. 4 oz. This syndrome is very new to us and we would love to receive more...
North Carolina
ZACHARY
Zachary was a full-term baby. He had low growth issues as an infant. During his circumcision, it was discovered he had Hypospadias and that was repaired at age 7 months. He began...
ROBERT
On April 5, 2010, Robert was welcomed into the world and into our family. He joined his Mom (Debbie), Daddy (Harris) and his big brother, Harris (age 5). He was born at 39 weeks...
JD
My name is JD Mayo. I was born with a heart problem. I had 4 open heart surgery’s. I am now 29 years old. I have two younger brothers and one older sister who is married and I am...
JERRELL
Jerell was born a little over 40wks. It was a struggle to stay pregnant that long. I had preterm contractions starting at 24wks and was in and out of the hospital and then on...
NORTH CAROLINA
LUKE
Luke was born on December 3, 2008, a healthy, head full of dark hair, weighing 6lbs. 12 oz. and 21 inches long. When Luke was just 12 days old he was diagnosed with Interrupted...
SYDNEY ~ 3 YEARS OLD
Our dear Sydney Jaymes came into this world on November 25, 2009. My pregnancy was going very smoothly and was uneventful until my 28th week. My latest ultrasound showed that she...
OHIO
JOEY – 2 YEARS OLD
Joey was born in the summer of 2011. We didn't know there were complications until a few hours after his birth. He was soon diagnosed with Tetralogy of Fallot and a few weeks...
VALERIE
Valerie was born in January 1997. She was delivered by emergency c-section at 36 ½ weeks gestation, weighing just 4 pounds and 7 ounces. As soon as Valerie was born she was...
Ohio
CONNOR
Connor is our second of three boys, born in March 2007. His medical needs came as a complete surprise; we had no reason to suspect that he wouldn’t be born healthy. His first year...
KIRSTEN
Our story began on April 7, 2005 when we had a beautiful little 7lbs., 2 oz. little girl.Kirsten was our first baby and we were so excited to be parents. Everything seemed great,...
Oregon
Brady
When I first found out that I had the little known genetic disorder called 22q11.2 Deletion Syndrome my specialist, Dr Lax the dentist did a nasal biopsy. I have 4 older siblings...
CALEB
We didn’t find out that Caleb had the 22q deletion until after he was born. My pregnancy was normal without any complications. All my tests came out normal. I went into labor...
OREGON
ZOE – 4 YEARS OLD
My daughter, Zoe, will be five years old in September. I knew when she was born something was different. Zoe could not breastfeed so we saw a lactation consultant. The...
Pennsylvania
JACK RYAN
Jack was diagnosed at Age 2 following VSD repair surgery at CHOP. He is now a healthy, happy, very active 11 year old in middle school. Jack’s biggest challenge has been his...
HOPE
Hope was very anxious to come. They had stopped my labor for almost two weeks when she was taken by emergency c-section on the first day of my 35th week. I had “genetic” testing...
BENJAMIN
Benjamin was born full term on October 3, 2008. He was a seemingly healthy baby boy and all we knew at the time was that he had hypospadias, an abnormal opening on the tip of his...
LUKE
Soon after Luke was born the hospital pediatrician noticed he had a slight heart murmur, but told us that most baby’s are born with murmurs and they usually go away as soon after...
NOAH
Noah had 22q since birth. He was in NICU when he was born with a hole in his throat. We had to get him a g tube and tie his stomach becuse of reflex issues. We just found out that...
PENNSYLVANIA
JORDAN ~ 12 YEARS OLD
My name is Karen, I have a 12 year old child with 22Q deletion and we were diagnosised between 2001 and 2002. My son was not meeting his milestones at 16mths old he started...
PATRICK
Patrick was diagnosed at three weeks. He has since had three open heart surgeries. Two of them occurred before he was five weeks old. He is treated at CHOP for his 22q. Patrick...
Puerto Rico
ALEXALY
Alexaly is our 6 year old princess. She was diagnosed at age 2 months when she was born with tracheal stenosis and many other heard conditions. She has undergone four heart...
SOUTH CAROLINA
CARTER
Our story began with a causal comment at a routine ultrasound when I was 30 weeks pregnant. The ultra sound tech mentioned that I had excess amniotic fluid and would need further...
South Carolina
CHRISTIAN
I found out Christian had Di George Syndrome when I was 5 months pregnant. The heart doctor said that his heart was so bad that they suggested I should not have him. I felt like...
LAURA
Laura Nelson is a vibrant young girl with heart for music and animals.Laura Nelson was born with a nasal regurgitation; her doctor’s said her soft palate had not formed. When it...
Tennessee
MADILYN
Our first child, Madilyn Grace was born Aug. 9, 2009 at 38 weeks at 4 lbs. 10 oz. and 17 inches long. She was small but perfectly healthy. We took her home two days later. Every...
ELIZABETH
We found out about Elizabeth having 22q when she was 8 months old. She was admitted to Childrens Hospital for failure to thrive. When she was six weeks old she has her first...
MASON (AKA:NOODY)
Mason Westbrook Millsaps D.O.B. 11/5/07 AKA: NooDy – NooDles He was born at 36wks and weighed lbs 13oz and spent 12 days in the NICU @ East Tennessee Children’s Hospital for...
KASEY
I was 6 months pregnant when Kasey was diagnosed with DiGeorge Syndrome. Kasey was 2 days old when she had her first heart cath. The doctors found that she a Had an ASD, VSD,...
TENNESSEE
ZAK - 20 YEARS OLD
This is a long story as Zak is 20 years old.....we love him with all our hearts and he has taught us so much about life and living......here goes:I was active duty Air Force at...
TEXAS
KIRSTEN - 13 YEARS-OLD
During my first pregnancy, our baby was diagnosed in utero with Truncus Arteriosus, which meant she had a single large arterial vessel as opposed to 2 vessels which are needed to...
ELIZABETH - 9 YEARS OLD
Elizabeth was born in 2004 with a low birth weight and eating issues. She was listed as a failure to thrive. We visited many doctors over the years since she was just over a...
BRAEDEN – 9 YEARS OLD
I found out I was pregnant in February of 2003. At the 10 week mark they were having a hard time finding the baby's heartbeat, so they did an internal ultrasound. Finally hearing...
Texas
WILL
Will Smith is a beautiful, happy little boy! He loves bubbles and going for walks in his stroller or gait trainer. We recently discovered the key to his heart is ICE CREAM...
Aron
Aron was born to my 15 year old daughter in February 2001. During his first check-up, our doctor heard the murmur and sent us to be screened at Cook Children's Heart Clinic. They...
GRACE
Grace was diagnosed with the 22q deletion at 3 1/2 years of age. She has had three surgeries on her palate to help with her VPI. She has had speech therapy since 2 years of age....
AMELIA
Amelia was born wih tetrology of fallot due to the 22q. Her repair was done at 3 months of age has been a success so far. Amelia recently tested out of Early Childhood...
UTAH
OHIA – 9 years old
Our beloved nine year-old daughter Ohia was diagnosed with 22q at 17 months old. She was born on the island of Maui, a healthy and normal baby, but oddly she looked too perfect...
VIRGINIA
SIERRA – 7 YEARS-OLD
Sierra was born in March of 2007. She was born with a "cat cry" and the team of doctors immediately suspected that she had cri du chat syndrome. So, while she was in the...
Virginia
CALEIGH
Caleigh was born in September 2000, and was diagnosed with 22q deletion at 3 months old. She’s had 3 heart surgeries, with an initial diagnosis of Tetrology of Fallot. Many other...
Washington
NOAH
My son Noah was born with a congenital heart defect called Tetrology of Fallot. For the longest time, this is the only defect that we knew about. He had his first heart surgery...
Wisconsin
MASON
Mason was born on January 28, 2008. Mason had a heart murmur at birth but it wasn’t until 2 weeks later that we discovered his 22q11.2 deletion. He had a VSD, ASD, and parachute...
TESSA
My name is Tessa K. and I am 26 (almost 27) years old. At 24 years of age I discovered I have 22q11 sequence.Throughout the course of my life I dealt with health challenges. I had...
WISCONSIN
SAMARA ~ 5 YEARS OLD
Our first blessing, Samara, was born with a crooked smile. Thankfully, her pediatrician recommended follow-up at Children\'s Hospital of Wisconsin, where she was diagnosed through...
MASON 5 years old
Mason was born in December 2008, a healthy 7 pound baby. He was on track developmentally, but doctors were skeptical with his weight and growth. At two, 2 we noticed that Mason...
Other
JORDYN- 14 YEARS OLD
Our beautiful daughter Jordyn was born after a normal pregnancy, and a long 17 hour labour. After they took her from me, one of the nurses came and whispered, "...she has an...