5 years old
Des Plaines, Illinois
Warrior #218
Axel was born on February 16, 2020, in Chicago, IL. The world was just beginning to crack open with news of a new virus, but we had no idea how much our own lives were about to change. Within weeks, the whole world shut down. Suddenly, I was home with 4 tiny humans, trying to navigate the struggles Axel was having as a newborn, trying to do e-learning, and keep everyone fed and loved.
As our fourth baby, our only boy, after three girls, we thought we knew what to expect by now, the rhythms of infancy, the developmental timelines. But Axel moved to his own rhythm from the beginning. He was calm. Too calm. He didn’t cry much. Didn’t babble. Didn’t roll or reach. Wasn’t interested in toys. People told us not to worry. That he was just “chill.” That “boys are slower.” That “every baby has their own pace.” That he is the fourth, and his sisters do it all for him, so why would he try? But I knew in my gut this wasn’t about pace or lack of motivation. It was about something deeper.
I didn’t want platitudes. I wanted answers.
We started early intervention, added therapy after therapy: PT, OT, speech, developmental, and feeding. He struggled to gain weight. He struggled to sleep. He had multiple surgeries for sleep apnea. Every inch of progress came slowly. Hard. And every time I asked, “Why is this so hard?” I felt like I was screaming into the void.
Then came the phone call. June 9, 2022. I was alone for a rare moment, sitting in a nail salon. I answered the call because I didn’t want to miss this one. And in the middle of that bright, buzzing space, with strangers chatting around me, I heard the words that cracked open my world:
SYNGAP1. Intellectual disability. Epilepsy. Autism. Severe global delay.
I stared out the window while the voice on the phone kept talking. I was frozen. My hands under the UV light. My heart breaking open in a way I can’t put into words. No one prepares you for that kind of grief. Not grief for a death, but for a future. For the version of your child you thought you’d have. The dreams you didn’t even realize you’d built.
In August, I stumbled across a video from the SynGAP Research Fund about a specific type of seizure: eyelid myoclonia. My breath caught. Axel did that. The fluttering eyes. The strange movements while eating. I thought they were quirks. Funny faces. But they were seizures. And in that moment, I realized how much I didn’t know. An EEG confirmed it: epilepsy. Another layer to a diagnosis that already felt too heavy to carry.
He was officially diagnosed with autism on September 20, 2022. Three diagnoses in four months. Each one took something from us. But each one also gave us clarity, language, direction. And slowly, community.
I found SRF. The Facebook group. The webinars. The stories. And for the first time, I didn’t feel crazy. I didn’t feel alone. Parents reached out, strangers, but not strangers. They said, “We see you.” And I believed them.
Now, Axel is five. He’s nonverbal, but not silent. He’s learning to use an AAC device, and it’s like watching a new world open for him. He just gets it. He’s always understood so much more than we gave him credit for. Now he’s showing us.
He’s starting Kindergarten this fall. He’s still in ABA. Still working through epilepsy. We have just a few breakthrough seizures a month. We live in constant vigilance. But we also live in awe.
Axel is joy. He is sunshine. He is laughter that bubbles up from the belly and pulls everyone in. His smile lights up any room. He’s silly, snuggly, bright-eyed, and full of love. He’s obsessed with water, music, bubbles, Mickey Mouse, Encanto, swinging on our swing, and jumping on the trampoline with his sisters.
And those sisters, his three older sisters, are their own world. Navigating his diagnosis and their own personal struggles. I often wonder: Am I doing enough? Am I loving them all the way they need to be loved?
Some days, I grieve what SYNGAP1 has taken. I grieve the ease, the milestones we don’t get to have. I grieve the conversations we may never have, the independence that might not come. I grieve who Axel might’ve been if SYNGAP1 hadn’t shaped his path. But I also try not to live in the “what could’ve been.” Because right in front of me is this incredible, funny, radiant little boy. And he is. He is love. He is magic. He is exactly who he’s meant to be.
We celebrate everything. Every button pressed on his AAC. Every new sound. Every time he tries a new skill. Every time he looks at me, and I know, without a word, he’s saying “I love you.”
We cheer for the tiny victories because nothing is small in this world.
SYNGAP1 is lifelong. It’s relentless. It’s filled with unknowns. But so is love. So is parenting. So is this wild, heartbreaking, breathtaking life.
Axel’s story didn’t end with a diagnosis. It began there.
And we are just getting started.
