By Trey’s family
Trey is the sweetest 2-year-old boy with CdLS! He carries the HDAC8 gene, and we love our little boy so much.
I’ve always heard people say “happy baby syndrome” and wow does that describe Trey to a T!
He is always smiling and laughing and just wants to be tickled and loved on. He has undergone anesthesia 13 times and had 10 surgeries, but that doesn’t stop him—and neither does his trach! Trey spent 8 months in the NICU and is now home thriving! We are so lucky to watch Trey grow and change every single day!
He’s the biggest inspiration.
Trey was “growth restricted” while I was pregnant, and doctors weren’t sure why. I was seeing a high-risk doctor and doing every genetic test possible. Nothing came back. So they just told me, “You might just have a tiny baby!” But then, with my preeclampsia, I ended up having an emergency c-section, and Trey was born at 34 weeks at just 3.3 lbs and 14.9 inches.
He was born with his jaw fused together, no holes in his nose(choanel atresia) and was intubated and eventually at 2 months old Trey received his trach and gtube. At 2 weeks old, Trey and his mom and dad got genetic testing done in the NICU, which confirmed CdLS, the HDAC8 variant. A lot of this diagnosis makes sense with Trey having poor vision (wears glasses), being deaf (wears hearing aids), had a hole in his heart (ASD repaired at 6 months old), having a difficult airway(the trach), GI issues(the gtube), hypospadius(surgery not done yet), undescended testes and hernias(repaired in July 2024), and the non-verbal/non-mobile developmental delays.
Trey is in every therapy you could name, and we are so grateful for a diagnosis. It has connected us with so many families and has helped us a lot with why Trey is Trey!
Don’t let the diagnosis define your child. Let it help you, help your child. The more you know the more you can offer your kiddo! With Trey being so delayed, we decided to put him in every therapy possible, and this has helped him in ways we never knew were possible!
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