The Doctors Said He Wouldn't See His First Birthday — Here's How Old He Is Now

Turning Three

Happy 3rd birthday to my son — we made it past one, the age the doctor warned us kids with SMARD1 don’t survive. Countless hospital admissions later, we made it steadily through year two.

His dysautonomia flare-ups still catch us off guard sometimes, but overall, things keep getting easier.

If your days feel unbearable right now, maybe our story can offer some comfort. Life may bring real pain and hardship, but even the darkest tunnel has an end. Change how you carry the suffering: we’re just different, not less of a family — still whole, still complete.

Onward into year four, with hope and open eyes. Happy birthday, my son.

Turning Five

My son just turned five. The baby the doctor once said might not live past one has grown into a five-year-old with real swagger.

Only heaven knows how impossibly hard this road has been, but we held on — because we were the only ones who could carry this, and that’s exactly why you chose us to be your family.

Thank you for teaching us to see the rare, precious view most people never get, for walking us through every trial life could throw at us, and for teaching us to treasure every single moment. Happy birthday, my son.

Turning Six

Happy 6th birthday, my son.

The doctor said you wouldn’t make it past one — every birthday since has been its own small miracle. We’ve never once let go. Hand in hand, we’ve walked through every moment of this life with you.

Turning Eight: A Poem From His Sister

My son just turned eight. The baby the doctor said wouldn’t live past one, the baby who’s been in and out of the ICU more than 20 times — somehow, impossibly, he is eight years old.

His older sister wrote him something for the occasion. Some days I think she sees life more clearly than I do.

“Fate is written by heaven, and in this life, you were the lucky one — born into a warm, loving family, surrounded by people who adore you, never once wanting for food or shelter. So — what was the price? I’ve heard Mom say, for as long as I can remember, that you were born with a rare disease called SMARD1. Back then I knew nothing about rare diseases. But I knew it made everything so much harder for you. Every time we go out together, I feel all those eyes on us, but slowly, I’ve come to understand that what matters isn’t what they think — it’s what we think. We don’t need to feel ashamed. If anything, you’re more one-of-a-kind than anyone else, and I’m proud of you for it. Year after year, you keep growing, faster than I expect, and now, that day has come again, the day you were born. Your eighth birthday. I hope you get to learn happily and grow up healthy, just like any other kid. And I hope that someday, doctors find a way to treat you. Happy birthday!”