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Community rallying behind 4-year-old with rare metabolic disorder

KIFI

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    NASHVILLE, Tennessee (WSMV) — An area family says the fact that their 4-year-old is living today is an absolute miracle, but now they need your help to keep their little boy alive.

“He would just collapse, then I would ask him, ‘Buddy, what’s wrong,’ and he would say, ‘Momma, my legs just stopped working.'”

Katie Burch is describing her 4-year-old son, Sawyer, who was diagnosed with trifunctional protein deficiency — an extremely rare metabolic disorder.

“If it’s an infant, they normally die if it’s within the first weeks of life,” Katie said. “The fact that Sawyer made it past that point is a complete miracle.”

In and out of treatment and tests at Vanderbilt University Medical Center, Katie and husband Taylor say they’ve convinced little Sawyer that he’s a superhero, and that’s why he has to have so much lab work done.

“He calls his physical therapy ‘muscle classes,’ his leg braces, he calls them the superhero boot makers because they were specifically made just for him.”

But the Burches know his condition can quickly change.

“If he gets a stomach bug or he plays too hard in the summer and he doesn’t adequately rest, or he gets a sinus infection or a cold, he could go into a metabolic crisis which could lead to kidney failure and issues with your heart,” Katie said.

But there is hope. Katie and Taylor say it’s a medicinal C-7 oil being used in Pittsburgh Clinical Trials that’s showing successful results.

The cost? $150,000 a year, and not covered by their insurance.

“The C-7 oil is the only FDA-approved treatment for this disease, and it’s still getting denied,” said Taylor.

Now, friends — and even strangers — are rallying with a GoFundMe page to help pay for treatment.

“I feel like thank you is not enough, because this is my kid’s life and it’s hard thinking that I may not have him,” Katie said. “One stomach bug and he could be dead, and as a mama that just breaks my heart.”

There’s so much love for little Sawyer, and hope that he has a long life ahead of him.

The Burch family is now in their third appeal with their insurance company. If you’d like to donate to their GoFundMe page you can click here for more information.

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