Sawyer Burch, family update and thank community, promote Sawyer’s Race for Research fundraiser

BOWLING GREEN Ky. – A fundraiser for a local 10-year-old is coming up on Sept. 26. 

Sawyer Burch has Trifunctional Protein deficiency, an extremely rare disease affecting only around 100 people globally.

His family is sharing updates on his incredible fight and thanking the people of Bowling Green for all their support and donations.

Most children born with Trifunctional Protein deficiency die within the first week of life. 

Sawyer is now 10. 

“They said that at 10 he’d be in a wheelchair and he’s not and they said he’d have to have open heart surgery by the age of 6, and his heart’s fine. And we’re just so thankful for that because it’s given us time to fight for a cure,” said Katie Burch, Sawyer’s mother.

His treatments include eating under 20g of fat a day and taking a medicinal oil by mouth daily, that could cost tens of millions of dollars over his lifetime.

Since Sawyer’s diagnosis, insurance finally agreed to pay for his Dojolvi Triheptanoin, a fight that took the family several tries to win. 

“It’s truly how his body survives. You know, he has to have that oil for energy so his body doesn’t eat itself,” said Katie, “We wouldn’t have been able to have gotten it without the help of everybody around us rallying and helping us have that and fund it for us.”

A Go Fund Me raised the money for the bottles needed during the waiting process for insurance approval back in 2021. 

Since he was diagnosed 5 years ago, over a half million dollars has been raised and donated for research specifically for TFP by Sawyers Race for Research. 

“That has taken two different medications from a 20 year timeline down to a 2 to 3 year timeline with potential clinical trials on the horizon. And then also the doctor has been able to identify a pathway for gene replacement therapy, and that’s from our funding,” said Katie.

Sawyer also makes beautiful jewelry and artwork with shells and beads and sells them and gives the money he raises straight to his doctor.

“The money goes to Dr. Vockley to help him find a cure for Sawyer’s race for research,” said Sawyer.

Sawyer says he’s thankful to people for giving his diagnosis so much attention and support.

“It makes me feel good because people want to help cure my TFP,” said Sawyer.

His father, Taylor Burch, says he packs Sawyer around like a backpack when his legs get too tired.

“We still do most everything, we just do it different, we go to the beach, we have a little wagon we have with us and we sit him in that and just pull him across the beach with that,” said Taylor.

He is even playing baseball, with dad as his coach.

“We really didn’t know if he would ever be able to play baseball and so it’s just been amazing that because of Bowling Green and the support everybody gave us that we’re able to get to this point, said Taylor.

“I don’t want to lie and say that, you know, he’s by no means perfect, but to watch everything that he goes through, all the time and the extra difficulties that he has, I’m just constantly amazed that he stays so joyful,” said Katie.

“Thank you for helping me cure my TFP,” said Sawyer.