Every October, the United States celebrates Down Syndrome Awareness Month to promote advocacy for people with Down syndrome. Down syndrome, also referred to as trisomy 21, is a genetic condition in which a person has an extra copy of chromosome 21. It is the most common chromosomal condition diagnosed in the United States, occurring in about 1 in every 700 babies. Although many children with Down syndrome lead healthy, active lives and grow up to have successful careers and families, facing a Down syndrome diagnosis can be overwhelming for any parent, due to fear of the unknown. Thanks to Down Syndrome Diagnosis Network (DSDN), these parents can receive immediate support and education to make the diagnosis experience more positive. In honor of Down Syndrome Awareness Month, we chose DSDN as our October charity and made a donation of $5,000 to support their work in connecting parents of children with Down syndrome to the resources and networks of support they need to build confidence and celebrate their little ones.
DSDN is the largest national organization that supports new and expectant parents with a Down syndrome diagnosis, and their vision is that every diagnosis will be delivered in an unbiased, factual, and supportive way. Their main mission is to connect and support parents and their children from the time of diagnosis through age 3 by improving the diagnosis experience and providing valuable resources and connections that help families navigate each stage afterward. In line with DSDN’s work, the American Academy of Pediatrics (AAP) updated the Health Supervision for Children and Adolescents with Down Syndrome to include guidelines on how medical professionals deliver a Down syndrome diagnosis. Now, physicians are told to congratulate families, use person-first language, and connect parents to local support groups and resources. DSDN is also now listed as a preferred resource for families by AAP. DSDN hosts over 22,000 parents in their private online groups, creating a huge network of support where parents can connect with other parents who are at similar stages. With the rhetoric around Down syndrome changing, the world is finally seeing that individuals with Down syndrome should be accepted and celebrated.
If you are a new or expecting parent who has just received a Down syndrome diagnosis, DSDN has online support and resources for every stage of raising a child with Down syndrome:
- https://www.dsdiagnosisnetwork.org/online-support-for-parents-of-child-with-down-syndrome
- https://www.dsdiagnosisnetwork.org/find-resources
- https://www.dsdiagnosisnetwork.org/for-parents-of-children-with-down-syndrome
We asked members of our Kyte Club community to share their little ones with Down syndrome so we could celebrate them here, and we received so many sweet submissions! Read their stories below.
Submitted by Michaela Irving
“May 2022, we had our sweet girl, but we didn’t know she was hiding something extra special. The day after she was born, I noticed she had almond-shaped eyes and then a nurse also mentioned she noticed. From there, she was tested to see if she did indeed have Down syndrome. About a week later, I read her results online, which was hard, as no one ever called us. From there, we had lots of appointments to rule out any medical issues.
She is now 17 months and thriving. She is our first girl after having 2 boys. Everyone adores her and she has shown us that nothing can stop her.
Different is beautiful.”
Submitted by Catherine Dixon
“February 2023, my baby boy Noah Michael was born. I found out about his diagnosis during prenatal testing and was very nervous about what to expect—but he is truly my soulmate. I’m so in love with him and can’t ever imagine him not being on this earth!
Also, so excited that you’re using DSDN as your charity of the month! I just joined the [Rockin’] Mom Retreat in September, and was 1 of 4 moms with a 2023 baby!”
Submitted by Esmeralda Pilapil
“We found out Marina would have Down syndrome at 12 weeks when we went in for the gender blood test/NIPT. My husband was away in the field for the military, and my midwife called me saying, “Okay, she tested negative for trisomy 18, trisomy 13, but she did test positive for trisomy 21. Would you like to know the gender?” She just casually mentioned it and I went silent because I was speechless. I knew what it meant. She could tell I was having a hard time, and asked if I would like to sit with it for a while and talk about it at my appointment soon when they referred me to MFM. That call to my husband was probably the hardest I’ve had to do. What she didn’t know was the way she said it like it was normal, didn’t apologize, and was still so excited for me made all the difference. I am so grateful she was actually the midwife who [delivered] her and was with me every step of the way. I am grateful we had that extra time to prepare for her and come to terms with it, as it can be very hard. We knew she had two holes in her heart and were able to choose a hospital with a great NICU and CHOP for her open heart surgery at 6 months old. Marina is just like any other toddler and is so sassy, special, and strong. Happy Down Syndrome Awareness month! Thank you for always including our kiddos.”
Submitted by Rita Fox
“Benjamin is my homie with an extra chromie! He will be five in November and is my best friend. He loves so fully and deeply and has the sweetest heart.
We found out Benjamin would be born with DS and a severe heart defect when I was 12 weeks pregnant. He’s had three open heart surgeries in his short life and will need more as he grows, but right now, he’s thriving! He goes to preschool with his friends, plays sports and will be starting kindergarten next year! I couldn’t imagine life without him.
Thanks for supporting our babies and letting us share our stories.”
Submitted by Ashley Jacobsen
“I’m so happy y’all picked DSDN. I am currently a volunteer/moderator for my 2021 birth group. Here is Carvers story:
Prior to Carver being born, they saw a Choroid Plexus Cyst on my 20 week ultrasound, so they ordered a genetic test and told us not to Google what the cyst could mean (of course we Googled it). The genetic screener we took after the ultrasound came back positive for DS, and when we asked what this meant, they said there was a “50/50” chance our baby had Down syndrome. We had no idea what to think and were just numb with the news. At our second ultrasound, they said the baby had no ‘soft’ indicators for DS, and so the doctor believed it was a false positive. We were so happy our baby had no health concerns and was growing strong. We completely erased the thought that the baby may be born with Down syndrome from our minds.
When Carver was born April 18th, he was immediately taken to the warmer, and after what seemed to be over 10 excruciating minutes, a doctor solemnly came over and said she believed he had trisomy 21 based off his features and the positive genetic screener.
We’re happy to report that Carver is a happy, healthy, and thriving 2-year-old. His smile is infectious, and we are so lucky to have him in our lives and to be a part of the ‘Lucky Few’ community here in Texas. His favorite Kyte items are definitely sleep sacks and his blankets.”
IG: @little.extra.carver
Submitted by Samantha Paradis
“This is Blaire. She’s 3. I had a prenatal diagnosis at 13 weeks via CVS. I immediately joined the DSDN pregnancy group, where I found so much support. Four years later, and I’ve made some amazing friends on this journey. Blaire has taught me and everyone we meet so much about life. DSDN has been amazing in providing support.”
Submitted by Amy Mardis
“This is Maverick The Heart Warrior! He’s 1.5 years old and rocking the extra chromosome. We found out through genetic testing that he would have trisomy 21 and with that diagnosis, we just prayed and prayed that he would be healthy. Little did we know, he entered this world with a complete AV Canal Defect & two other holes in his heart that required open heart surgery. At just 9 months old, we spent his very first Christmas in the hospital, recovering from heart surgery. Our little warrior beat all expectations and was released from the hospital only 7 days after surgery.
Now he’s growing and thriving into a very energetic, vibrant little man, and we could not be more blessed.”
Submitted by Jennifer McCormick
“This is our extra special Riley! She just turned 4. She was born, of course, with Down syndrome, but also Congenital Heart Disease. Two surgeries later, she is doing amazing and crushing all of her milestones at school and dance! We are so proud to call her ours! We absolutely love the DSDN. It is a great community and the retreat is where it’s at!”
Submitted by Banessa Estrada
“This is my sweet Henry, the youngest of four. He made his debut on New Years 2021 and was a surprise birth diagnosis. He had to spend a couple of weeks in the NICU, but has been doing great since. The DSDN has been a great support since the beginning of our journey, and I'm so happy to see that they are this month’s charity. Henry is always on the go and loves meeting new people, causing his introverted mamma to step out of her comfort zone. We have learned so much since welcoming Henry and feel truly blessed to be a part of the Lucky Few.”
Submitted by Victoria Lopez
“My sweet Sofia. We formally received Sofia’s diagnosis at birth, although it had been suspected early in my pregnancy. At 12 weeks, I visited my OB for a checkup and to review blood work results. The doctor walked in, and went straight to discussing the results. She basically said everything in one big sentence. “Ok, baby is measuring fine…(you know the drill)...and also, your baby has a 90% chance of having Down syndrome. Have you heard about Down syndrome?” I said, “A bit, but not really.” She encouraged me that people with Down syndrome can lead really successful lives. She then said it was her duty as a professional to offer an abortion because babies with Down syndrome can be a lot of work and are often born with several health conditions. I told her I thought that was horrible, and she agreed.
Fast forward to the day I gave birth, I knew immediately when I saw her. Doctors later came in and confirmed she tested positive for trisomy 21.
Having a child with Down syndrome has brought so much joy in our lives. Sofia has offered us a unique perspective in life, while changing others’ perceptions about Down syndrome.
Thank you, Kyte Baby, for your inclusivity.”
Submitted by Halie McClaran
“Our little Lane was born in November 2021, and we had a surprise diagnosis at birth! He is our first and only baby (as of yet), and we love him SO much! He is now 22 months, walking all over the place, and getting into everything! He has a happy, silly, and loving personality!"
Submitted by Kuwaiola Ahina
“My sweet Ukiah, screened high-risk at 12 weeks gestation. He is 19 months old, walking everywhere, and doing all things!”
Submitted by Esmina Hamzagic
“This is Harun! Harun is 4 years old, and surprised us with his extra chromosome at birth. Harun was our first, so we definitely did not know what to expect, but being on this journey has taught us how to be patient and truly enjoy the little moments in life. Harun is obsessed with giving handshakes to anyone he meets and is such a social little guy! He loves chocolate and ice cream, and is the best big brother!
Thanks for choosing such a great organization near and dear to our hearts!”
Submitted by Song Watson
“This is Birdie. I am posting this on behalf of my cousin, who unexpectedly and unfortunately passed away at 3 months postpartum. Birdie is a miracle baby. She is everything that my cousin ever dreamed of, and the sweetest gift that finally made my cousin Megan a mom. She has defied all odds, and is hitting all of her milestones where she needs to, has healed from her stomach surgery she had to have at just a few days old, and just brings so much joy during such a hard time. Thank you so much for the consideration.”
Submitted by Natalie Boakye-Donker
“This is Maya. She is 12 months old. We found out that she likely had DS through our NIPT screening. I decided to forgo any further diagnostic testing and opted for just a more in-depth anatomy scan to look for any soft markers and take a close look at her heart, since about 50% of children with DS will have a heart defect. I was lucky to be raised around disabled people and have a cousin with DS, so that part didn’t really worry me, but the heart part absolutely did. At 21 weeks, they were able to see that she had a complete AVSD that would require heart surgery, which shattered my heart. Maya has done amazing though! She came home 4 days after being born with no supports, and at 3 months old, was referred to open heart surgery, which was done 2 days before she turned 4 months old, and she came home 8 days post-op. She’s a sassy, beautiful, smart baby and we couldn’t imagine life without her.
I love DSDN! I joined their pregnancy group as soon as I found out Maya likely had DS, and it was so nice to have that community. We are in our birth group now and the heart warriors group, and they have sub groups for everything you can think of. They’re awesome!”
Submitted by Kareem Kasey Thomas
“Meet Stellan, a true testament to the beauty of uniqueness! Stellan's journey began with a surprise Down syndrome diagnosis. From the moment he was born, we knew he was extraordinary. We were blessed to hold our special baby first, not a diagnosis.
Our hearts swelled with joy as we learned that Stellan had no major medical complications. We didn't dwell on the grief of a prenatal diagnosis, for we met our little hero before anything else.
Through the DSDN Facebook groups, we found an incredible community that embraced us as family. We've met new friends who cheer Stellan on as he conquers milestones at his own pace.
Stellan is smart, he's strong, and he is THRIVING. His journey reminds us that every child is a beacon of hope and possibility. He reminds us to celebrate the beauty of differences and support one another on this incredible journey called life.”
Submitted by Kera Mondez
“We have four boys and our youngest, Elliot, surprised us with an extra chromosome at birth. He was born in June and is just the sweetest thing.”
Submitted by Shaina Goedtke
“Life has a funny way of throwing curveballs at us when we least expect it. The moment that changed everything for us, the moment that drew a clear line between past and present Shaina, is still vivid in my mind.
A stranger walked into the room, a doctor unknown to us, bearing news that would forever alter the course of our journey. Jeremy, steadfast as ever, stood by my side as we absorbed the words that left me stunned. Our little Kenzie, they said, might have markers for Down syndrome.
Tears welled up in Jeremy's eyes and his hands found mine. He reassured me that, together, we would face whatever lay ahead, and that our love for Kenzie would be unwavering, no matter what.
In that moment, I clung to the hope that the doctor was mistaken. Dreams of a perfect family, of perfect children, can make it feel impossible that adversity could touch our lives. But as the days passed, reality settled in, and I knew deep down that the doctor's words were true. Kenzie had trisomy 21, and we were about to embark on a new, beautifully unique chapter in our lives.
This journey will have its challenges, but it will also be filled with an abundance of love, joy, and growth. Kenzie has already shown us the strength and beauty that comes from embracing the unexpected.”
Submitted by Chris Vetterick
“Thank you so much for supporting DSDN and celebrating our little ones! This is Brendan! We were overwhelmed by his diagnosis through prenatal screening at 12 weeks, but so grateful to have been connected to groups like DSDN to connect to others going through similar things. Brendan is now 15 months old and doing great…learning to crawl, stand and eat more foods. He is a small little peanut but has already shown us how strong, resilient and determined he is! And all the smiles and giggles just light up our days.”
Submitted by Sara Keeth
“This is Sutton (2)!
We found out her diagnosis at 12 weeks, due to NIPT testing. During my pregnancy, we had multiple appointments with my OB, MFM, and, eventually, Cardiology. Once Sutton was born, we spent a week in the NICU and were able to go home until open heart surgery. She had surgery at 4 months to correct her complete AV canal defect and recovered wonderfully! We have had multiple other surgeries and hospital stays since, including a scary 3 week PICU stay last year due to RSV/pneumonia. She is now a sweet, sassy, and loving toddler who is friends with anyone and everyone! She is working on walking in PT and doing wonderful in OT, SP, and VitalStim therapy as well!”
Submitted by Jean Drake
“This is Charlie! He is a happy, healthy two-year-old who happens to have Down syndrome. He was not officially diagnosed until he was about two-and-a-half months old, so our membership in the ‘Lucky Few’ was a huge surprise to us! Like many of his peers with DS (kiddos who rock an extra chromosome), Charlie is a heart warrior who underwent open heart surgery to repair a congenital heart defect when he was 6 months old. Now at two, he is SO close to walking and talking, but shows us everyday just how capable he is, despite his differences developmentally. He communicates his needs, shows affection and his preferences as well as any typical two-year-old! The Down Syndrome Diagnosis Network has been part of our journey from the very beginning. I love the feeling of community and normalcy I have gotten from being part of my son’s birth group (2021 July – December). We may be spread across the country, but seeing the development of other ‘rockin’ kiddos’ makes me feel less alone as a parent of a fabulously atypical child. Our stories are all different, but that extra chromosome connects us all—and DSDN connected us.”
