For his son, Mark Veilleux learned to live without sleep. He would rise in the dark every two hours and dance the familiar dance – lifting or rolling his son in his bed, shifting his body from one side to the other – so that pain wouldn’t take hold and sores wouldn’t take root. Veilleux went without a good night’s rest for more than 20 years, spanning the time between the day his son Marky’s muscular dystrophy crippled him and the night it took his life.
“It was a long, tough struggle, but we would have it no other way,” Veilleux says. “That’s our child.”
Doctors told Veilleux and his wife, Judy, their son likely wouldn’t live past his teens. But Judy never left his side during the day, and Veilleux relieved her when he returned home at night. Together, husband and wife kept their only boy alive until he was 36.
Having given his son so much, it would seem Veilleux would have little left for anyone else. Still, he has given more than 20 years to the hundreds of Endicott College softball players he has coached, and he has given time and energy to a slew of projects to improve the community around the school.
Veilleux made a promise to Marky in 2013 – the last year, the year when bright days were marred by close calls and ambulance rides – that he would do everything he could to ensure other children wouldn’t endure what Marky did. Fatigue bearing down and retirement approaching, Veilleux still strains to keep that promise. He shares his family’s story whenever he can, hoping it will move drugmakers and policymakers to action.
He insists he has more to give.
After the ball sputtered off the bat, Veilleux’s son set his sights on first base, trying to forge ahead with whatever might remain in his muscles. Veilleux watched his little T-ball player fall once, twice, again. “It was gut-wrenching,” he says.
Marky was 6 when a trip to first base seemed as daunting as climbing a mountain. Two years before, doctors directed the Veilleuxs to the Tufts-New England Medical Center in Boston, where they took a sliver of their son’s muscle. It revealed the truth: Duchenne muscular dystrophy, perhaps the cruelest form of the disease, would afflict Marky for the duration of what would be a short life. His muscles would waste away. His lungs wouldn’t function on their own. His heart would grow too weak to beat.
As Marky began to understand he couldn’t keep pace with the other kids or his older sister, Amy, Veilleux broke the news. The 4-year-old received it as a challenge, not a curse. He did the same when the wheelchair arrived at age 9; when, at 11 years old, he had surgery to cut the tendons in his heels that had grown tight and painful; when, at 12, he couldn’t lift a spoon to his mouth or a washcloth to his face and his parents had to begin feeding and bathing him; when, only 13, he braved a 121/2-hour operation to fuse vertebrae; when, at 28, they opened a hole in his neck that would allow a machine to breathe for him; or when he battled the several infections that ensued.
“It’s a hideous disease,” Veilleux says. “It’s like many little deaths.”
As those restless nights bled into mornings, Veilleux set off to Endicott College to work in his dual role: community service coordinator and head softball coach. He took the helm of the softball program in 1994, and in spite of his son’s many subtle deaths, his teams rattled off nine consecutive conference championships from 2003 to 2011, reaching the NCAA regionals in 2008 and 2014. In 2012, he marked his 500th career victory as a Division III coach, and he is now two wins shy of 600.
Along the way, he never played favorites, refusing to chastise players for a lack of skill – only a lack of effort. “My son couldn’t hustle,” he says. “He wanted to so bad.”
After the 500th win, nearly 200 people – faculty and alumni and loved ones – convened at the college president’s house to honor Veilleux. Former players sent messages about how he shaped their lives. He was bashful but appreciative of the event organized by his longtime assistant coaches, Laura Carlson and Mark Kulakowski. “I never hit one home run or pitched one game,” Veilleux says.
They weren’t thanking him for home runs. “You can lean on him,” Kulakowski says.
Marky did. Veilleux and Judy strived to make their son’s life feel like other boys’, even if it was spent in a bed or a wheelchair. Marky graduated from Danvers High School, where he relished his role as the stat keeper for the school’s football team. He met players from the New England Patriots and Boston Red Sox. He ventured to Disney World a half-dozen times and, later, with his friends to Las Vegas. Like the parents of other 23-year-olds, his mother worried and his father encouraged his son to have fun.
As he grew older, though, Marky couldn’t attend as many of Endicott’s games as he once had; because of his poor circulation, comfortable days felt frigid. Kulakowski grew close to the family and watched the routine, again and again – an aging father, at once strong and delicate, lifting his grown son to and from a wheelchair.
“That was always moving to me,” Kulakowski says. “The will and determination.”
Marky couldn’t ignore his fear in the early hours of Sept. 30, 2013. Normally, after shifting and settling, he would drift off in a matter of minutes, but the 36-year-old sat awake with his father through the night. Veilleux didn’t leave his son’s side until he calmed and fell asleep. When Veilleux jolted awake almost an hour later, Marky wasn’t breathing. He called 911. He and his wife affixed a bag to the hole in their son’s throat and squeezed and hoped.
Marky was gone by the time the EMTs arrived.
“Everyone tells you time heals all wounds,” Veilleux says, “but it hasn’t gotten any easier.”
He has spent the time since trying to fulfill the promise he made to his son. No drugs are yet approved by the Food and Drug Administration to treat Duchenne muscular dystrophy. Veilleux has joined an army of families hoping to spur approval for eteplirsen, a drug that could help prolong the active years of those with the disease before they require wheelchairs, potentially providing them a few more chances to run to first base.
He has written newspaper columns, a statement to an FDA advisory committee and letters to Congress. He has spoken to representatives from U.S. senators’ offices. He is ready to venture to Washington, D.C., to speak when called upon.
In April, an FDA panel advised against approving the drug, noting studies have not been robust enough to warrant widespread use. But even if the fight to approve eteplirsen fails, Veilleux vows to try to find other avenues – to keep his promise.
After 20 years spent rising in the dark to tend to his son, Veilleux still wakes at 4 a.m. to check on Marky. Now, though, Veilleux doesn’t amble down the hall – he makes the short drive to St. Mary’s Cemetery.
Early every morning, flashlight cutting through the dark, Veilleux finds the grave and the hint of solace that eludes him through long days. Sometimes, he talks about his grief and his love.
More often, he settles into a small folding chair and doesn’t utter a word, content to sit by his son in the predawn quiet.