Deemed “a miracle to be alive,” 6-year-old Sawyer Burch has inspired a second fundraiser to help make advances in research on trifunctional protein deficiency, all while living with the disease and wearing his favorite superhero shirts.

A 5K race will be July 23 and all the money raised will go to medical research, according to Katie Burch, Sawyer’s mother.

People can participate in Sawyer’s Race for Research in-person or virtually. The in-person run starts at Potter Gray Elementary School’s Pavilion at 8 a.m.

Runners (or walkers) of the virtual race can take part in the campaign at any time and place on July 23-24 and submit their results on the fundraiser’s website.

All participants have to register for the run and pay the race fee of $35.

A similar fundraiser was organized last year. Burch said they were able to raise $70,000 from the community. This money enabled specialists to move from the research stage of medicine development to clinical trial, according to Burch.

The medicine is also supposed to treat neuropathy, which, along with cardiomyopathy and retinopathy, is common with TFP deficiency, Burch said. Because of neuropathy, Sawyer’s body cannot warm itself up or cool itself down in accordance with outside conditions, Burch said.

The Burch family plans to see the specialists they work with twice a year.

One of their doctors is located in Pittsburgh and the other one is in Nashville. However, the family has a special protocol for action in case an emergency happens and they have to go to a hospital. Burch said before Sawyer began receiving treatment for the disease, hospitalizations were frequent.

Burch recalled explaining to Sawyer that the doctors were going to check whether he had superhero blood the first time they went to Pittsburgh and telling him that the braces he had to wear were superhero boots.

While as of now there is no medication that would cure TFP deficiency, what helps Sawyer is a triheptanoin supplement, also known as C7 oil. Burch said that before he started receiving the treatment, Sawyer was “slower than his peers, he was tripping and falling a lot and was almost lethargic when sick.”

The oil supplement helped him rebuild his muscle strength and allowed him to play with moderation. Burch said Sawyer can now climb up the stairs and is almost able to graduate from his speech class.

Burch describes Sawyer as “a very positive boy” despite all the challenges he faces.

A special diet is of paramount importance to Sawyer’s health, Burch said. Because of the disease, his body does not have the ability to process fats into energy. For that reason, Sawyer can only have as much as 20 grams of fat a day, Burch said. By comparison, a spoon of peanut butter is 75% of that – 15 grams.

On top of that, Sawyer has to eat every two hours. Otherwise, the disease will attack his muscles, according to Burch.

Burch said she has been able to get in touch with five other families with children who have the same disease in the United States. She also said that the oldest person with TFP deficiency is in their mid-20s.

Registration for the race can be completed on the Sawyer’s Race for Research website. Burch said, this fundraiser will help specialists to make the next step for Sawyer and other children with TFP deficiency to be able to live a longer life.

– The race website is at https://runsignup.com/Race/KY/BowlingGreen/SawyersRaceforResearch.