Baby boy in Johnson City faces rare disease, family hopes to help others

Brently Ledford

JOHNSON CITY, TN (WJHL)- At just 9-months-old one Johnson City boy faces a rare diagnosis, and is in between 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,” Brently’s Mom Rebekah Ledford said.

It’s a condition where the sutures in the skull close prematurely, that constricts brain growth, which can lead to developmental delays, deafness, and blindness among other side effects.

“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 he is having another serious invasive surgery. According to Ledford, he will be in surgery for hours while the surgeon cuts him from ear to ear, exposes the scalp, and remove/fracture Brently’s skull and part of the bones around his eyes. They will then reassemble his skull and forehead.

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 and this Friday, the sheriff’s department is hosting a blood drive in Brently’s honor.

“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.

The drive goes from 11 a-m to 4 p-m this Friday.

To book an appointment or for more information you can call 423-788-1414 or 423-791-5168.

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

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