We love our Luka, Pookie, Cookie, Cutiepie, so much and no syndrome or diagnoses will ever stop that love, it only continues to grow!!!

  • Family


Age Group:

  • 5-10


Profile Created: April 28, 2024

Our Story

We found out during my 35th week of pregnancy that Luka has CDH (Congenital Diaphragmatic Hernia). Which is basically a hole in the diaphragm and in utero causes some organs to be in the lungs, there are different severities. Luka was fortunate to not have a very big hole and he was stable enough to have surgery on it when he was 3 days old. His stay in the nicu was about 6 weeks which is amazing considering the problems that could have came with CDH.

Luka has been such a beautiful light that never stops shining! From sun up to sun down he is laughing (sometimes for no reason, alone in his crib, or with his family) and if a group is laughing around him you can bet he will chime in and do his “fake laugh” and clinch his fists (it’s the cutest thing ever)! He has so many cute quirks already at 2 years old. He has been a knee walker for quite sometime, we have worked really hard in therapy to get him up off his knees and start walking! I am happy to announce he is now walking independently about 75% and other times crawling or knee walking! Luka will carry around his bucket of toys, it used to be a set of 3 of the most random things but now it is a bucket and if you see his bucket you know Luka is not far behind! He also loves his car race track he will play independently for 10-15 mins at a time putting the cars on and off the track and laughing all by himself!

He has pretty much missed every “milestone” he’s been very behind, developmentally. But he does say mama, dada, bubba, ba, and up! Usually he is very quiet unless he wants something then he will definitely scream and let you know!

Originally we had genetic testing and they couldn’t find anything with the symptoms he had. We decided to do the big test and we found this MED13L gene that had been mutated and formed at conception.

We are hopeful for the future and will never stop praying for our miraculous baby boy Luka, who has already overcome so much. He is loved and adored by his older two brothers who will protect him at all costs! He definitely laughs the most and the best with his daddy and brothers! He gives momma the best “huggies” (hugs)! One cute quirk he has is poking in between your toes and our dogs paws!!! He is now pointing to tell you he wants something or he will pull you toward whatever he wants or where he wants to go! Like another I read he will also sit and bounce on you like he’s not 30lbs! But laughs and smiles while doing it!

Overall he is just such a happy loving toddler boy! He gets into every cubby, drawer, table, like any toddler would! He is in PT, OT, Speech, and a special therapy all twice a month, so he has 8 therapies right now!