What Is 22q11? Discovering the Syndrome of Life
- Ybsul Freites
- Jul 28
- 3 min read
When we heard the words “22q11 deletion syndrome,” we had no idea what that meant.All we knew was that our baby was coming with a condition that sounded big, strange… and yes, scary.But deep inside, we also knew something else:This wasn’t a mistake. This was part of a divine plan.
Understanding the Diagnosis
22q11, or DiGeorge Syndrome, is a rare genetic condition.For most people, it sounds unfamiliar — even doctors may not have all the answers.It affects multiple systems in the body: heart, immune system, speech, development… and every case is different.
But in our home, we decided to give it another name.
We called it “The Syndrome of Life.”
Because for us, it wasn’t about what Isabella “lacked” —It was about everything she came to teach us.
Our Reality, Not the Fear
From the beginning, we decided not to be guided by fear.Yes, there were moments of uncertainty.Yes, there were days when medical terms overwhelmed us.
But Isabella’s presence was stronger than any diagnosis.Her heartbeat reminded us every day:
“I’m here. I’m alive. I’m love.”
A Diagnosis Is Not a Sentence
Doctors told us things we didn’t want to hear.They spoke of limitations. Of “risks.” Of delays.
But we chose to listen to a deeper voice —The one that lives in a mother’s heart.The one that believes in miracles.
And Isabella, from day one, started breaking every expectation.Her story is not about what she can’t do —It’s about how far love can go when you believe.
Lessons From the Unknown
Through Isabella, we’ve learned:
That every child is unique, diagnosis or not.
That healing doesn’t always come through medicine, but through connection.
That the unknown doesn’t have to be terrifying — it can be transformative.
And above all…That a child with a condition doesn’t come to break you.They come to expand you.
A Message to Parents Who Just Got the News
If you’re here because you just received a diagnosis like this, I want to tell you something:
Let love lead.Let curiosity be your guide.And know that there’s no one right way — there’s your way.
A Truth from the Heart
It’s not easy.It’s still painful sometimes.You don’t always smile. You’re not always sure.
Today, I’m writing about something that happened seven years ago, and even now…my heart still trembles, my eyes still fill with tears.
What carries me in this moment is the certainty that we’ve had a covering of faith —and the presence of extraordinary people,who’ve made it possible for me to sit here, telling this story.
I don’t know if it will help anyone.But I write it with the simplicity of truth.
There is so much in this story that lives in Isabella’s paintings.Her art carries our pulse. Her hearts beat with all of ours.
💬 Let's keep talking...
Do you want to know more about how we’ve lived this path?
In the next chapter, I’ll share what happened in the first few weeks of Isabella’s life —
her surgeries, the hospital, the unexpected angels we met…
and how her little heart began to paint its own colors.
Art has the power to heal, connect, and inspire. By joining the Heart Guardians community, you are taking a step towards embracing your emotions and sharing your story. Let’s embark on this journey together, one brushstroke at a time.
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