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Local 4-year-old with rare disorder needs life-saving treatment

Sawyer Burch is a superhero.

At least, that’s what the 4-year-old tells everyone.

He calls the braces he wears on both of his feet his “superhero boots.” He is always excited to get his blood drawn as the doctors tell him he has superhero blood. They also tell him that he has super strength, and that he needs to take classes to make his muscles stronger.

He believes the special doctor his family takes him to see in Pittsburgh only treats superheroes.

His room is adorned with various types of superhero memorabilia. In fact, Sawyer can often be found wearing a Superman shirt. That isn’t a surprise to his loved ones as Superman is who he wants to be when he grows up.

Sawyer’s parents, Katie and Taylor Burch, continue to power their son’s belief that he is actually a superhero, because for them it is a reality.

“He believes he is a superhero. I will continue to foster that because, at this point, just being alive, he truly is” a superhero, Katie Burch said.

Just a few weeks ago, Sawyer was diagnosed with an extremely rare, life-threatening autosomal recessive genetic disorder called trifunctional protein deficiency (TFP).

This condition prevents the body from converting certain fats to energy, particularly during periods without food.

Those with TFP may suffer from recurrent rhabdomyolysis (a breakdown of muscle tissue), liver dysfunction, weakness, numbness, pain from nerve damage, potential vision loss and weakening heart muscle.

Symptoms can lead to frequent hospitalizations and premature death.

Sawyer is one of just 100 reported cases in worldwide medical literature.

“It’s kind of lonely being a part of just 100 cases worldwide,” Katie Burch said of her son. “That and being unable to get answers and knowing you are the only one in the state has been lonely.”

Katie Burch, 31, and her husband, Taylor Burch, 34, began to notice something was amiss when Sawyer began to have trouble walking up the stairs in their home and up hills.

After months of tests and hospital appointments, Sawyer was diagnosed with TFP in February.

Ever since, he has been on a strict diet as he must eat a particular amount of fats each day.

“He is limited to 25 to 30 grams of fat a day,” Taylor Burch said. “In perspective, a spoonful of peanut butter is 15 grams of fat. When he gets older, it’s only going to go down. Some teenagers are down to 10 to 12 grams of fat a day. He also cannot fast. The disease will actually start to break down his muscles if he goes without food for a long period of time.”

Since his diagnosis, the family has visited Pittsburgh, where the leading TFP physician in the world, Dr. Jerry Vockley, is located.

Sawyer’s local pediatrician, Dr. Kelly Kries at Bowling Green Internal Medicine & Pediatric Associates, has been working closely with Vockley to help optimize Sawyer’s medical care.

Currently, the family lives constantly ready to rush to the hospital.

Any fever, too much playing outside or any stomach bug could be life-threatening for him.

His mother, who works at The Medical Center at Bowling Green, has established an emergency protocol. They have bags packed for everybody and lists for what to do in case they have to drop everything and go.

There is no cure for TFP.

However, there is a newly approved, life-saving oil supplement called triheptanoin known as C7. Patients treated with C7 have shown significant improvement compared to those using another oil regimen.

But due to the rarity of the disease and scarcity of C7, the oil is incredibly expensive. The Burches said the average net price of the drug for infants and small children is about $46,000 a year.

To make matters worse, the Burches said that insurance companies are denying them coverage for C7 due to most oils being bought over the counter.

“It’s one of the first things we were told that we would get no coverage on this,” Taylor Burch said. “It’s just so rare, and nobody knows enough about it.”

With the family running out of options, a friend stepped up and decided to help.

Mary Heslin works with Kreis and without even telling the family, she started a GoFundMe account to raise money for the C7 treatment.

“I’ve done fundraising in the past, and I really just wanted to help,” Heslin said. “It was really a chance encounter and they are just such wonderful people. Sawyer is absolutely the sweetest, most polite little boy.”

The account, named “Life-Saving Treatment 4 Super-Strong Sawyer Burch,” has a set goal of $50,000. More than $10,000 has already been raised.

“We feel so unworthy, and it just blew us away,” Katie Burch said. “That felt out of left field for us. I don’t even know if I have the words to talk about it. I had to just stop looking at it. I am just overwhelmed by the support of people.”

“We had no idea and all of sudden we got the text from Mary,” Taylor Burch said. “We have complete strangers donating right now. I look at some of the names and I have no idea who they are. It really is going to be helpful.”

The Burches have another son, Hawkins. They say he is the more “mischievous” of the two brothers as Sawyer is affectionate to just about everyone he meets.

Before the COVID-19 pandemic struck, Sawyer attended Greenwood Park Primary School, where he often hugged his closest friends. His mother describes him as the “social butterfly” of the family.

“He loves his people fiercely, and he teaches me Christ’s love daily,” Katie Burch said. “Whenever I have a bad attitude about something, he is always positive. He has brought so much light into our lives. He loves his friends dearly.”

Both parents looked on as their son played with his toys in the family’s living room floor one recent day. His superhero boots were strapped on to provide support, but he didn’t even notice.

Even though he has a very strict diet to follow, Sawyer loves to eat healthy foods. He began to get a little tired from his play time, so Taylor Burch brought some cereal for his son to eat.

Sawyer is currently also taking taekwondo classes, which his parents said have made him considerably stronger.

“We have ridden this superhero wave as long as we can,” Katie Burch said. “He has never been ugly, and he has been so kind about having so much lab work and pain. We don’t know what the future holds or how long we have with him. That’s made us reevaluate life and what’s important.”

Katie Burch has since found others throughout the country who are facing the same situation with TFP. Just last week, she was on a Zoom call with seven other mothers who all had children with the same rare disorder.

“The fact that he is alive and is as strong as he is now is an absolute miracle,” Katie Burch said. “That’s just his stamina of not complaining. He is our little sunshine, and we want to help anybody else we can.”

The quicker Sawyer can get the C7 treatment, the more likely he is to have his best possible future while slowing the progression and long-term damage that can occur from this disorder.

Until then, the young boy with “superhero” abilities will continue to inspire those who hear his story.

“One of my friends told me that Sawyer has already made an impact on so many people – me included,” Taylor Burch said. “He said that he has a feeling that God isn’t done using this little guy to work in his kingdom. What more can you say than that?”

– Follow reporter John Reecer on Twitter @JReecerBGDN or visit bgdailynews.com.


Nathanael Mieses Nevarez


News
Glasgow PD accused in wrongful death lawsuit

A Glasgow man who died in custody was the victim of excessive force by the Glasgow Police Department, a federal lawsuit claims.

The estate of Jeremy Marr filed the lawsuit Monday in U.S. District Court for the Western District of Kentucky against the GPD, three GPD officers – Guy Turcotte, Hayden Phillips and Cameron Murrell – and the city of Glasgow.

Marr, 35, died April 14, 2020, after police encountered him outside a residence on Cleveland Avenue.

The lawsuit accuses Turcotte, Phillips and Murrell of excessive force, wrongful death, negligence, cruel and unusual punishment and battery. GPD and the city of Glasgow are accused in the suit of negligent hiring, retention, supervision and training.

Kentucky State Police, which investigated the death, said in a news release last year that GPD officers encountered Marr on April 14 after receiving a call for service regarding a man who had reportedly entered a Cleveland Avenue residence unlawfully.

KSP said Marr had an “unspecified medical emergency” as officers tried to arrest him. He was then taken to T.J. Samson Community Hospital in Glasgow, where he was pronounced dead.

The lawsuit, filed by attorney David Broderick, provides more details on the incident, claiming that Marr was in the residence making remarks that people were trying to murder him.

Turcotte, Phillips and Murrell began interacting with Marr as he was coming out of the residence at the request of police, and Marr told the officers someone was trying to harm him and he didn’t want to die, the lawsuit said.

“At this point, Marr was not physical or reactive in any way, but was only attempting to speak to the GPD policemen,” the lawsuit said.

Marr notified the officers he had a knife in his possession and was going to hand it to them, but he left it in his pocket after being instructed not to get it out, the suit said.

Within moments, an officer grabbed Marr by his jacket “for some unknown reason and without provocation” and turned him around to face the bumper of a police cruiser, the suit said.

Marr then reportedly begged for the police not to kill him or let anyone hurt him while he was against the hood of the vehicle.

“At no point did the GPD policemen release their physical grasp on Marr and the GPD policemen took Marr to the ground, restraining Marr’s arms above his head and straddling him,” the lawsuit said. “In less than approximately three minutes, Marr was tased eight to 10 times directly onto the skin of his back, with the majority of the taser discharges occurring within two minutes.”

The lawsuit then claims at least two GPD officers were on top of Marr restraining him, holding down his wrists and legs and continually using a stun gun against him while yelling at him not to move.

Marr was also repeatedly struck with a knee in either his side or on some portion of the lower half of his body, causing him to be unable to breathe, the suit said.

Marr became unresponsive and was brought to the T.J. Samson emergency room, where his body temperature was “highly elevated” and he still had prongs from the stun gun in his back, the lawsuit said.

Broderick claims Marr’s death was the consequence of GPD failing to adequately train its officers in using a reasonable degree of force when a person is posing a threat to themselves or others.

“As a result of this failure, there is a pattern of GPD officers in exercising unreasonable force during the course of an arrest or inquiry,” Broderick said in the lawsuit. “The conduct of the GPD officers during the incident in question, as well as past cases worked by the GPD, have shown that the GPD routinely exercises excessive force during the exercise of official duties.”

Maj. Terry Flatt, a GPD spokesman, declined comment.

In a statement emailed to the Daily News, attorneys Tom Kerrick and Matthew Cook, representing the city of Glasgow, said police were contacted by an elderly woman who reported that an unknown male unlawfully entered her home.

Marr appeared “erratic, agitated and paranoid” when police encountered him, and officers attempted to calm him and deescalate the situation.

Marr, however, did not comply, became combative and resisted arrest, the attorneys said.

“Mr. Marr was eventually subdued with non-deadly force and handcuffed,” Kerrick and Cook said. “Mr. Marr subsequently experienced a medical event and emergency medical personnel attended to him and transported him to the hospital, where he later passed away.”

The attorneys said KSP and a special prosecutor found no wrongdoing on the part of the Glasgow officers.

“We are confident that the evidence will show that the responding Glasgow officers acted appropriately in response to Mr. Marr’s actions and that the claims asserted in the lawsuit are not well taken,” Kerrick and Cook said.

The lawsuit asks for an unspecified amount of damages.

– Follow courts reporter Justin Story on Twitter @jstorydailynews or visit bgdailynews.com.


News
Matalco moving into Franklin's former Quad/Graphics plant

An industrial building that was once home to a printing company that was one of Simpson County’s largest employers will soon see a renewal.

Matalco, an Ontario, Canada-based producer of aluminum products for the extrusion and forging manufacturing industries, has announced plans to locate its first plant in the southeastern U.S. in the 461,000-square-foot building on 300 Brown Road in Franklin that was home to the Quad/Graphics printing plant that closed in 2019.

A Kentucky Economic Development Finance Authority news release said Matalco is making a $53.5 million investment that will create 60 full-time jobs in coming years.

The remelt rolling ingot facility, when fully operational in 2022, will produce alloyed ingots from recycled aluminum for customers throughout the Midwest, including automotive-related companies.

“They have purchased the building and will start retrofitting it,” said Dennis Griffin, executive director of the Franklin-Simpson Industrial Authority. “That will take a few months.”

The opening of the Matalco plant will fill a building that opened as Brown Printing in 1979 and once employed nearly 400 workers. It had more than 100 employees when it closed in 2019 and had sat empty since then except for some storage companies using it.

Griffin said the Canadian company has found a good location for a plant that will produce as much as 270 million pounds of aluminum ingots per year.

“We’ve had some activity on that building,” Griffin said. “But this one seemed like a good fit. It’s a great company. They’re focused on the automotive industry now, but a Kentucky location gives them flexibility on getting into the beverage can business.”

Seeing activity in a building that was a victim of a contraction in the printing industry is a welcome sight for Franklin Mayor Larry Dixon.

“This ... company will bring new life to a building that has been vacant for two years,” Dixon said in a news release. “Matalco will be providing some great job opportunities for our city. We really look forward to working with them as they become an important part of our community.”

Robert Roscetti, Matalco’s vice president for corporate development, said the new plant is part of the company’s growth strategy.

“This investment demonstrates our continued commitment to serve our customers and expand our market share,” Roscetti said. “It’s in direct response to the growth and demand that we are experiencing with our products and services.”

Matalco operates as part of Matalco Inc., a Brampton, Ontario-based company founded in 2005 that produces more than 1 billion pounds of aluminum billets and slab ingots annually.

The company is receiving state incentives to come to Simpson County.

KEDFA in January approved a 10-year incentive agreement with Matalco under the Kentucky Business Investment program. The performance-based agreement can provide up to $1 million in tax incentives based on the company’s investment of $53.5 million and its employment targets.

By meeting its annual targets over the agreement term, the company can be eligible to keep a portion of the new tax revenue it generates. The company may claim eligible incentives against its income tax liability and/or wage assessments.

– Follow business reporter Don Sergent on Twitter @BGDNbusiness or visit bgdailynews.com.


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