Johnson City baby to have 2 major surgeries, diagnosed with rare disease

(Photo: WJHL)
(Photo: WJHL)

JOHNSON CITY, TN (WJHL)- At just 9-months-old one Johnson City boy faces a rare diagnosis and two two major surgeries. After getting diagnosed with Sagittal Craniosynostosis, his parents learned he would have to undergo an invasive, massive skull surgery.

“I think as a parent you don’t want to see your baby get a scratch. So to imagine them being essentially cut open from ear to ear in a room full of strangers having an extremely major, major reconstructive surgery done on their skull it’s really difficult,” said Rebekah Ledford, Brently’s mom.

It’s a condition that makes the sutures in the skull close prematurely, which constricts brain growth. It can lead to developmental delays, deafness, blindness and more.

“I had a moment where I was just lost totally lost, how am I, I can’t make this better for you. And so I asked God in that moment just help me be brave. And I became brave for Brently. I couldn’t take his pain away but I could advocate for him, and I could snuggle him, and I could sing to him, and let him know that I was there,” Ledford said.

In October, Brently is having another serious invasive surgery. According to Ledford, he will be in surgery for hours.  During the surgery, he will be cut from ear to ear, his scalp will be exposed, his skull and some bones around his eyes will be fractured.

Ledford said despite it all, they are thankful for this little boy.

“He is perfectly imperfect and it is my absolute honor and joy to be his mom,” Ledford said.

The Ledfords said they want to bring awareness to this rare disease. Brently’s dad is a Washington County Sheriff’s Deputy. The sheriff’s department is hosting a blood drive on Friday to honor Brently.

“We’ve had so much support for our family for Brentley and so we want to pay it forward that’s what the blood drive is for to make sure that our local hospital community has blood,” Ledford said.

For more information on the Ledford’s story click here.

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