By Cassandra Brown

Ezra was born on the first day of “Heart Week” on February 7, 2020. He is such a happy-go-lucky kid, always laughing and smiling. He lights up any environment and is always friendly and outgoing. Ezra was diagnosed when he was 11 days old with the NIPBL gene mutation. While Ezra is happy, he does suffer from chronic illness due to CdLS. He has complex congenital heart disease, mild kidney failure, severe reflux, a small airway, and low muscle tone. Due to these issues, he gets breathing treatments 3x a day.

He’s g-tube dependent and takes ten medications daily, a few every 8 hours. He also is dependent on oxygen while sleeping.

He has developmental delays, so he doesn’t do things other almost 3-year-olds would do independently, like feeding himself, walking, or talking. He loves to snuggle and chill out some days, but most days, he loves to get into trouble with his Kitty, Nova. He also loves going on walks and car rides and enjoys playing with his sensory toys. Ezra has faced many challenges. The most severe being a lengthy NICU stay, open heart surgery at six months old, and complications from heart surgery. We almost lost him, but I am so grateful he pulled through!

Having a child with CdLS is so nerve-wracking at first. Google does not help with the anxiety that comes with the shock. However, despite all his struggles, Ezra is one of the sweetest kids I’ve ever known. If Ezra didn’t have CdLS, he wouldn’t be who he is, and while that is bittersweet due to his health problems, I couldn’t have asked for a better kid.

The CdLS Foundation has helped connect us with other families through Facebook groups and the newsletter.

If I could tell the world one thing, I’d say, “Don’t apologize! His life is not a sorry one”. When they ask about his diagnosis, many people always say, “aw, I’m so sorry; he’ll be okay, though,” and it doesn’t hit the way they want it. Change your approach to disabled kids and their parents.

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