After 15 surgeries, Louisville boy with one of world's rarest di - WDRB 41 Louisville News

After 15 surgeries, Louisville boy with one of world's rarest disorders passes away

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LOUISVILLE, Ky. (WDRB) -- A Louisville boy with one of the rarest disorders in the world has passed away.

Twenty-month-old Oakley Tate Schweitzer suffered from Med 12 Associated Syndrome, a disorder only two other people in the world suffer from.

Throughout his young life, Oakley had 15 surgeries and spent most of his time at Cincinnati Children’s Hospital.

“Didn’t matter what he went through, how many surgeries, procedures ... it didn’t matter. He always was happy,” said Allison Schweitzer, Oakley's mother who works as a Louisville Emergency Medical Service Worker.

She and her partner Merrick, along with their 2-year-old son Keaton, would make the drive from Louisville to Cincinnati several times a week.

On Monday, Oakley’s body just couldn’t fight any longer after suffering a stroke and a massive seizure. He was placed on a ventilator, but because of how rare his disorder was, doctors didn’t know what the next natural progression would be.

“(The doctors) told us there was nothing else they could do for him,” said Schweitzer, holding back tears. “He was surrounded by his family, friends and all his nurses that were special to him. I just held him to my chest and rocked him, and he passed away very peacefully in my arms.”

All through his struggles, love came in from around the world through phone calls, texts and social media posts. Schweitzer’s EMS co-workers also showed their support by posting photos labeled #OakleyStrong.

“They’ve been supportive from day one, and they will always continue to be and they still are," Schweitzer said. "And it really does mean a lot. It really does."

As the family finalizes his funeral plans, they said they take comfort in seeing the smiles he would put people’s faces while never losing his own.

“He was just the happiest baby,” Schweitzer said.

The Schweitzer family has set up a GoFundMe page to help pay for funeral expenses.

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