March 13 was World Trisomy 13 Day. It is a day dedicated to raising awareness about Trisomy 13 and honoring the children and families whose lives are touched by it. Around the world, many people wear yellow on this day as a symbol of support and awareness. Some families also include pink and green, colors that have become meaningful within the Trisomy 13 community.
At Living with Victory, this day holds a very special place in our hearts because that is exactly what Victory has.
Trisomy 13, also called Patau syndrome, is a rare genetic condition caused by an extra copy of chromosome 13. Many families search for information about Trisomy 13 after receiving a prenatal diagnosis. Awareness days like World Trisomy 13 Day help share real stories and accurate information. As you’ll find out, many statistics are old and outdated. Sadly, doctors either do not know or do not share!
What Is Trisomy 13?
Trisomy 13 occurs when a person has three copies of chromosome 13 instead of the usual two. This extra genetic material affects development and can cause a number of complex medical challenges.
Some of the medical conditions commonly associated with Trisomy 13 may include:
- Congenital heart defects
- Brain or neurological differences
- Cleft lip or palate
- Vision or hearing challenges
- Feeding difficulties
- Developmental delays
It is important to note that EVERY child with Trisomy 13 is unique, and the medical needs and abilities of each child can vary widely.
How Rare Is Trisomy 13?
Trisomy 13 occurs in approximately 1 in 10,000 to 1 in 16,000 live births. Because of the serious medical challenges associated with the condition, families who receive this diagnosis are often given very discouraging statistics.
But statistics don’t always tell the whole story — especially when the way those statistics are gathered can be influenced by the care that is or is not provided. Many families who are told their child has Trisomy 13 are also told that the condition is “incompatible with life.” Families are often given a very discouraging outlook and told there is little hope. In some cases, when a baby with Trisomy 13 survives birth, hospitals may recommend only comfort care rather than attempting medical interventions.
Because of this, survival statistics can sometimes reflect the fact that many children were not offered full medical treatment. When families choose and are able to pursue medical interventions and supportive care, outcomes can look very different, and many children go on to live longer and fuller lives than families were initially led to expect.
Behind every diagnosis is a child with a name, a personality, and a family who loves them deeply. Our daughter, Victory, is living proof of what is possible when children with Trisomy 13 are given full support and medical care — and her journey has taught our family lessons we’ll carry forever.
Our Story
Behind every diagnosis is a child who is deeply loved. When families first hear the words Trisomy 13, they are often given statistics and worst-case scenarios. But children are not statistics. They are sons and daughters with personalities, smiles, favorite things, and families who cherish them.
Our daughter, Victory, is one of those children.
Her life has taught us more about strength, faith, and the value of every single day than we ever could have imagined. Before we ever even knew we would have a baby girl with this diagnosis, God was preparing us and we now know- He has everything already all planned out.
When our prenatal tests came back positive for Trisomy 13, we were immediately called into the genetic counselor’s office. We were told our baby would most likely be miscarried or stillborn, and if she survived birth, she probably wouldn’t live past her first birthday. Then, after sharing that devastating information, we were asked two questions: first, did we want to know the baby’s gender, and second, when we would like to schedule a termination appointment.In that moment, our hearts were heavy, but we knew we couldn’t let fear guide our decisions. We knew it was not our choice to decide if our baby lived or died. That was up to God. So, we prayed, seeking strength and wisdom, and we told them we would move forward with hope — trusting that God’s plan for our daughter was bigger than any diagnosis or statistic. And we were right about both. It was a girl and the plan for her life is truly bigger than her diagnosis.
At the next few appointments, during ultrasounds and check-ups, the sonographer would quietly take the pictures, and we would meet with the doctor afterward. Each time, the doctor explained the outlook for our baby girl — who we now knew was Victory Rose — and asked again when we would like to schedule an abortion. We continued to refuse.
At our final appointment at that hospital, the doctor said, “If you go through with this pregnancy, your child will be a drain on the family, have no emotional connection with you or her brother, and will never even know you. If the baby is alive at delivery, we will keep her comfortable and put her in your arms until she passes.”
My husband, with resolve and the righteous anger of the Lord in his eyes and voice, told them that would never happen and that we would no longer be coming to that hospital. From that moment, we began searching for a hospital and a doctor who would provide Victory with the care she deserved when she was delivered.
There is so much more to this story and so many small miracles along the way — including a doctor reaching out to us, rather than us searching for him. He would ultimately become the doctor who helped save Victory’s life. We will share the full story about him in a separate blog post and even a future podcast episode.
But for now, I will say this: although Victory was diagnosed with Trisomy 13 and the statistics we were given were grim, we chose full intervention and refused to accept comfort care as the only option. We were determined to give her every chance and every opportunity we could.
Just because Victory has an extra chromosome does not mean her life is worth any less. That conviction led us to Boston Children’s Hospital, where she would be treated like any other child. If her symptoms showed she needed something, she would receive the care she needed — just like any other patient.
World Trisomy 13 Day is about more than statistics or medical diagnoses. It is about real children, real families, and real lives that matter.
Why Trisomy 13 Awareness Matters
World Trisomy 13 Day is about more than medical facts. It is about recognizing the value of every life and supporting families who are walking this road.
Raising awareness helps:
- Encourage understanding of Trisomy 13
- Support families facing a difficult diagnosis
- Celebrate the lives of children living with this condition
- Share hope with parents who may feel alone
Children with Trisomy 13 are often called T13 warriors, and their strength continues to inspire families, doctors, and communities around the world.
If You’ve Recently Received a Trisomy 13 Diagnosis
If you are reading this because you or someone you love has recently received a Trisomy 13 diagnosis, you are likely feeling overwhelmed and afraid. Many families are given very little hope at first and are presented with statistics that can feel devastating.
But it’s important to know that you are not alone, and there are communities and resources available to support you as you navigate this journey.
Organizations like Support Organization for Trisomy connect families with information, research, and other parents who have walked this road before. Hearing real stories and connecting with other families can make an incredibly difficult time feel a little less isolating.
Every child with Trisomy 13 is unique, and every family’s journey will look different. If you have just received this diagnosis, take things one step at a time and seek out people who will support you with compassion, honesty, and hope. If you’re on Facebook, there are plenty of support groups as well. The first one I found is the one that allowed me to realize, there was hope. Feel free to join us there in the group Trisomy 13 LIFE Support- Living with Patau Syndrome and of course, follow us at on our Facebook page too!
How You Can Help Raise Awareness
On March 13, people around the world help raise awareness for Trisomy 13.
Here are a few simple ways you can participate:
💛 Wear yellow (or pink and green)
📸 Take a photo
🏷 Tag Living with Victory so we can see and share
💬 If Trisomy 13 has touched your life, share your story
Every story shared helps bring greater understanding, compassion, and hope.
Because every life — no matter how short or how medically complex — is a precious gift.
Join the Conversation
Victory’s story is just one example of what can happen when families are given hope and when children with Trisomy 13 are given the opportunity to receive care and support. While the journey has not been easy, it has been filled with moments of strength, faith, love, and unexpected joy.
If you or someone you love has received a Trisomy diagnosis, organizations like Support Organization for Trisomy offer helpful resources, community, and encouragement for families navigating this journey.
Feel free to share in the comments or connect with us on social media as we honor Victory and all the incredible Trisomy 13 warriors today.
Together we can continue raising awareness and reminding the world that every life matters. Victory continues to remind us that a diagnosis does not define a life — and that every child is fearfully and wonderfully made.
