Lisa and Rodney Tregoning knew that their sons’ lives would be cut short because of their muscular dystrophy, but the couple had no idea they would lose both their boys within a month of each other.
Matthew Tregoning died in his home June 20 at the age of 21, and his brother Cody died in the hospital July 19 at the age of 24. The boys suffered from one type of muscular dystrophy known as Duchenne muscular dystrophy, a genetic disorder that causes muscle degeneration and weakness.
“I just have to learn to adjust,” Lisa Tregoning said. “I miss my boys so much. I just want them back. It’s hard to let go.”
Matthew loved professional wrestling, video games, animals and the outdoors. One time at a professional wrestling event he attended, one of his favorite wrestlers, John Cena, came down to the crowd and gave Matthew one of his wristbands. He loved the wristband so much, Matthew’s mom placed it in his casket with him.
“He was a social bug,” Matthew’s aunt and Lisa Tregoning’s twin sister, Linda Sortais, said.
Cody loved his computer, video games and movies. He had recently designed a bathroom on a Lego computer game and was able to do it with only one finger — a limitation of his muscular dystrophy, his mom said. After he died, his mom placed his computer and Xbox controller inside his casket with him.
“He was very smart,” Lisa Tregoning said. “He had a photographic memory.”
The two graduated from Windsor High School and attended Easter Seals Camp in Empire from the time the boys were 7 years old until they were 18.
“They smiled all the time,” Sortais said. “They were more happy-go-lucky than a lot of people in this world.”
Lisa Tregoning said she first noticed symptoms when Cody began walking. She said he would fall down a lot and also had trouble eating. She later took him to the doctor, who performed a test and found he had muscular dystrophy. Matthew was tested soon after and was also found to have the disorder, which doctors said limited life expectancy to 16 to 19 years old.
“Finding out was terrible because they told me I was going to go through the grief of losing a child twice,” Lisa Tregoning said. “(Matthew and Cody) knew about their life expectancy, but they wouldn’t talk about it because they wanted to live so much.”
Eventually, the boys lost their ability to walk and used wheelchairs for mobility.
“It was hard watching your children stop walking. Cody stopped walking at age 9 and Matthew stopped walking at age 7,” Tregoning said. “But at least they got to walk a little bit.”
Both boys were on medication for most of their lives to manage their pain. They received back surgeries to help correct their posture, which became worse as the disorder gradually weakened their muscles.
“The doctors told me, ‘Cody’s 24 and Matthew’s 21, they should be gone by now,’ ” Lisa Tregoning said. “But the doctor said, ‘Lisa, it’s the care you gave them.’ ”
Inside the family’s home were ventilators, oxygen tanks and feeding tubes. Lisa Tregoning watched how nurses took care of the boys in the hospital and learned to do the same with them at home. She eventually had to change the boys’ tracheostomy tubes once a day, and in the later stages of the disease, they couldn’t eat on their own and needed feeding tubes.
“You were the emergency care, the intensive care and the nurse,” Sortais said to her sister. “You were all of them.”
The boys also struggled with discrimination at school, Lisa Tregoning said.
“Most people stayed away because they didn’t know how to deal with them,” Tregoning said.
However, the boys found joy from people in their lives that would show them compassion and care, she said. Francy Henderson, a substitute teacher with the district’s special education program, and pastor Todd Everhart with First United Methodist Church would read to the boys often.
“The boys loved it when people would read to them,” Tregoning said. “They would change their voices to do the different characters. They loved that.”
When Matthew died in June, he had a smile on his face, and the chaplain who was with the family said he’d never seen someone die so peacefully, Tregoning said.
Cody took Matthew’s death hard, she said, and after that, he wasn’t the same. He went into cardiac arrest multiple times after his brother’s death and eventually died in the hospital.
At Cody’s funeral, Henderson stood next to the casket and read to Cody one last time from a story he’d written himself when he was 8 years old.
Now that her two boys are gone, Tregoning said day-to-day life has been difficult for her, and Sortais has been with her to keep her company while her husband works during the day.
“It’s hard,” Lisa Tregoning said. “But you know what? I wouldn’t have traded them for the world.”