Bowling Green family needs community’s help to save their 4-year-old son’s life

BOWLING GREEN, Ky. – It’s something that no parent ever wants to hear, your four-year-old child has a disease that could take his life at any time with little warning.

Now a Bowling Green family needs the public’s help to save their son’s life.

The Burch family is doing everything they can to protect and hopefully save the life of their sweet son Sawyer after he was diagnosed with an extremely rare genetic disease one month ago.

Trifunctional protein deficiency is a term that has shaken the Burch family.

Sawyer Burch was diagnosed with this extremely rare genetic disease in February. So rare, there are only about 100 known cases worldwide.

Most children born with the disease die within the first week of life. Those who survive, often die from heart attacks before they are 6 years old.

“We just, we don’t know and that is hard as a mom too, thinking that you are going to have to go through losing a child,” Katie Burch said.

Katie Burch is a labor and delivery nurse and used to be a pediatric nurse, so she could tell something was wrong with her first-born child.

“The big things are retinopathy, cardiomyopathy and neuropathy. So far, which is just a blessing from God, his heart looks OK right now. There is no cardiomyopathy, and his eyes look great, there is no retinopathy. However, he has neuropathy, muscle weakness through his hips into his legs. He complains about his legs hurting. He would collapse and I was say, ‘buddy, what’s wrong?’ and he would say, ‘Momma, my legs just stopped working,’” Burch said.

It is a terrifying diagnosis for his mother and his father, Taylor Burch.

“I try to be the rock for the family. I try to be the support that my wife and kids need but at the same time I just break down every once in a while and I’m just like, ‘today’s not a good day,’” said Taylor Burch.

“He’s doing really great now but any stomach bug, sinus infection, illness can throw him into a metabolic crisis and that’s the hard part is his body can just tank and we don’t have any control over that,” said Katie Burch.

Sawyer experiences daily struggles with the disease.

From lack of stamina to blood sugar problems, his fat content must be strictly regulated for the rest of his life and so will his blood sugar or he could die.

So what can be done about the disease?

Right now, there is a medicinal oil that has shown very successful results so far, but the cost would be around $150,000 per year, and the Burch family is currently fighting their health insurance company to cover the costs of this life-saving treatment.

Without the oil, Sawyer’s likelihood of survival is extremely small.

“We have to prove that we are eligible, and we have to prove that our child could die with this,” said Katie Burch.

For now, Sawyer believes he has superhero blood and is a little different than other kids because he is super.

“I am going to be super fast. I’ll be like Black Panther,” said Sawyer.

He believes his stabilizing boots are camouflage and is excited to show them off.

“I always had dreams of what I wanted to do with my sons and I’m still going to do those dreams, just in a modified version. If he can’t go hiking and camping with me, hey, he’ll be my backpack,” said Taylor Burch.

A GoFundMe account has been set up in the family’s name to help raise money for the medication Sawyer so desperately needs.

To donate, CLICK HERE.