QUECHEE — No one would have faulted Leo DuMoulin if the numerous medical procedures he underwent throughout his 10½ years of life left him grumpy.
But Leo, a student with special needs at Ottauquechee School who died of a seizure in his sleep in February 2021, is remembered by classmates, teachers and family for his bright demeanor, kindness, hugs and his love of the color yellow and school buses.
“The main thing about Leo was he was just a little ray of sun,” said Anna Tregubov, Leo’s mother.
The school plans to honor him by naming a new patio in his honor, a plan the Hartford School Board approved, at least in concept, at a meeting last month. In the wake of Leo’s death, Tregubov received condolence cards from Leo’s classmates, some of which were included in the board’s packet ahead of its May 24 meeting.
“Leo was so nice and funny and kind,” wrote one student. “… He (always) was kind even if he was sad.”
Born with a terminal diagnosis in August 2010, Leo came home from Dartmouth Hitchcock Medical Center on hospice care.
Doctors initially thought he had hydranencephaly, a condition in which fluid replaces brain tissue. The fluid made it difficult for doctors to see Leo’s brain on scans, so at first it was unclear how much brain tissue he had. As a palliative measure, doctors inserted a shunt from his brain to his abdomen to drain the fluid.
“That saved his life,” Tregubov said.
Afterward, doctors realized that Leo had a lot of brain tissue. It just wasn’t visible due to the fluid. Doctors changed his diagnosis to hydrocephalus, which means water on the brain that can build up pressure resulting in brain damage. In Leo’s case, he was left with a seizure disorder. More procedures followed, including a surgery before his first birthday to reconstruct his cranium and make his head smaller.
“Once his head was smaller, (he) started hitting milestones,” Tregubov said. “He was a real miracle.”
After Leo turned 3, Beth Pastor, a physical therapist, started visiting the family’s home in Quechee as part of an early intervention program. She helped him learn to walk and run.
By going into the family’s home, Pastor said, she felt like she became part of the family. “Which is a gift,” she said. “And Leo was a gift.”
Often when children turned 5 and entered school, Pastor would no longer see them. But as it turned out, she also works at the Ottauquechee School, which meant she was able to work with Leo for the rest of his life.
When Pastor first met Leo at age 3, he wasn’t walking or crawling much. He had trouble eating.
Still, Pastor said, Leo had “such a bright spark in his eyes. You could see it.”
Eventually, Pastor taught Leo to climb stairs. But the school has an elevator, which Leo preferred — he called it an “upelator.” He also loved using Pastor’s trampoline, which he called a “jumpoline.”
He had a “wonderful way of twisting words to make them mean more of what they meant,” Pastor said.
Leo also found joy in greeting the other students and teachers as he passed them in the school hallways.
“He was always happy — unless he couldn’t have the upelator,” Pastor said. “He called me Ms. Beth. He said, ‘Hug?’ He didn’t use full sentences, but you always knew.”
Leo had friends wherever he went.
“Everybody knew Leo,” Tregubov said. “That was my name, ‘Leo’s Mom.’ He had his community at school. At the hospital. My dad’s church. He just connected to people. He would know when you were hurting. He had a lot of empathy. He couldn’t really vocalize it. Somehow he’d make it better. That’s just how he was. He was just so loving. He really made you feel like you mattered.”
In spite of the risk COVID-19 presented to someone as medically fragile as Leo, he returned to in-person school in the fall of 2020. Pastor said she wore nursing scrubs and changed in between working with Leo and another medically fragile child who returned to Ottauquechee that fall.
“It worked,” she said. “Neither one of them got COVID. Both of them really, really needed to be at school. That’s their life.”
Tregubov said it was difficult for Leo to understand COVID-19 and the efforts people were making to avoid one another and the virus.
“COVID was really hard on him,” she said.
Academically, Pastor said Leo was “blossoming that fall.” Though not a phonetic reader, she said he was adding words to his vocabulary all the time.
Because it wasn’t clear exactly what damage the seizures had done to Leo’s brain, his limitations were unclear. Working with kids like Leo, whose disabilities aren’t always well-defined, “makes you think about how you should treat all kids that way,” Pastor said.
Given his growth that fall, his death in his sleep on Feb. 3, 2021, came as a surprise to members of the school community. He had attended school the day before.
“It was hard,” Pastor said of the effect of Leo’s death on the school community. “All the kids knew who he was. A lot of times that’s not the case. You know the kids in your grade; maybe the kids on your bus.”
In response to his death, “every bulletin board in that school was covered with letters and drawings and poems to Leo,” Pastor said. “We mourned together. The entire community did.”
Leo’s death was less of a surprise to Tregubov, who said she saw warning signs beforehand.
Throughout his life, Leo had “ups and downs with epilepsy,” according to Tregubov.
“Some days (and) years were worse than others,” she said. “By the end of his life, we had run out of treatment measures for his seizures.”
He started losing skills, she said. He had to get a feeding tube. He lost weight and wasn’t eating.
“Then he just started kind of fading,” she said. He “became very weak. I kind of saw it coming.”
But knowing it was possible to lose him was different than actually doing so.
Leo died in a toddler bed placed at the foot of Tregubov’s bed. She checked on him at midnight before she went to sleep and again at 5 a.m., when she noticed he wasn’t breathing. She started CPR, but it was too late.
“I think this is how he figured would be the easiest,” she said. “He was sleeping. He didn’t even wake up.”
It wasn’t possible to have a traditional funeral or memorial service for Leo due to COVID-19, but Tregubov said the school held a parade of sorts in his honor on a weekend. It included at least one ambulance, fire truck and snowplow; police cars; a bunch of motorcycles and nine school buses.
More recently, Principal Amelia Donahey called Tregubov to inform her of the patio idea. A sketch of the patio included in the board’s May 24 packet shows a fire pit with a grill surrounded by eight benches seating up to three people each, as well as four flower beds to include yellow flowers that bloom from April through September.
“It just really touches me that people still kind of remember Leo,” she said. “His class still is thinking about him. I think it’s going to be awesome.”
On Wednesday, when Leo’s class graduated from fifth grade, they decorated a chair with yellow balloons in his honor. Tregubov attended to accept a yearbook on his behalf.
It’s “really sweet. I hope I don’t cry,” she said in an interview before the ceremony. “My biggest fear is he will be forgotten.”
An event to dedicate the patio is slated to take place later this year when the patio is complete.
Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.
