Tucker’s Story
by Mom, Kennedy

Tucker had feeding difficulties as soon as he was born.

He would suction his tongue to the top of his mouth and would not suck. He was quickly diagnosed with failure to thrive. Thankfully he did out grown that.

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Tucker also failed his hearing screening at the hospital and was sent for a retest at 2 weeks old which he passed.

We soon notice he had a very concerning noisy breathing and was diagnosed with Tracheomalacia.

At 5 months old tucker was diagnosed with Craniosynostosis and at 7 months old had cranial vault reconstructive surgery!

At 10 months old Tucker had not met any of his milestones. He was not babbling at all, couldn't sit up, not crawling, etc. We were then referred to physical and speech therapy as well as another hearing test.

He failed this hearing test and received hearing aids.

One week after his 1st birthday he had his first seizure.

At 13 months old he had his first appointment with the geneticist. The test they ran all came back normal. We all knew there was something genetic going on but couldn't find answers. Every specialist we saw would ask if he had such and such syndrome and we would always reply with, "we know he has something but don't have answers"

In 2021 his neurologist did an epilepsy panel on him to see if he could find any answer and it also came back normal. We saw Dr after Dr did test after test and no one could ever tell us anything.

 Christmas 2021 we finally decided to look for a geneticist out of state to see if we could get some help. In January 2022 I contacted Cooks Children's Genetics in fort worth TX and got an appointment for August 2022. We traveled 5 hours for the appointment. The geneticist said she was positive there was a genetic disorder that was causing all of his problems. We did the mouth swab and got results in January 2023 at 5 years old. We had a mix of emotions with the diagnosis.

We were excited to finally have answer but at the same time it made it all real.


Diagnosed June 2023