A Christmas to Cherish: A Successful Liver Transplant for 10-Year-Old Luke Brassard is "Nothing Short of a Miracle'

By Wendy Victora, Northwest Florida Daily News, Fort Walton Beach
Dec. 25--NAVARRE -- On Christmas Day, Luke Brassard might eat turkey. He might devour several helpings of pumpkin pie and wash them down with hot chocolate.
These days, the 10-year-old boy who was born with a rare metabolic disorder can eat anything he wants.
In mid-October, he received a new liver, which freed him of a diet so restrictive his parents had to measure everything he ate.
They also monitored his activities, had his blood levels checked every two weeks and measured out a prescription formula that was the mainstay of his diet.
Even the slightest imbalances could cause future brain damage.
That's what helped his parents decide to put Luke's name on the list for a liver transplant -- a procedure not without serious risks.
"You want the best for your kids. You want them to be healthy and have great opportunities," said his father, Mark Brassard, tears choking his words. "Now he has that.
"It's the neatest thing our family has ever received."
Mysterious illness
Within days of their little boy's birth, his adoptive parents, Mark and Tracy, had concerns about his health. Doctors told them not to worry, that all was normal. Then, at the age of two weeks, Luke was admitted to the hospital with an official diagnosis of "failure to thrive."
Three days later, they were told he had a genetic metabolic disorder, which prevented his body from breaking down three proteins that are in most foods.
By that time, a buildup of these proteins had already started poisoning Luke, and he was left with a mild case of cerebral palsy.
Known as the "Maple Syrup" disorder, it is often detected through the distinctive odor of a patient's urine and ear wax.
The Brassards were told there was no cure, only strict management of diet and activities. Doctors also warned them that, despite their best efforts, Luke might experience future damage from the cumulative effect of even small amounts of toxicity.
"Every time we sat down, 'Is he getting too much protein? Is he not getting enough?' " his dad said. "Every meal was a balancing act."
"The first four years, we wrote down everything he put in his mouth," Tracy added.
Through it all, Luke was a "trooper," according to his parents.
"He never complained," his father said. "He was so good about drinking that formula, which tasted horrible."
'It was God's plan'
Several years ago, doctors discovered that Maple Syrup disorder children who received a liver transplant were effectively cured.
To learn more, the Brassards traveled to Pittsburgh, Penn., in the spring to meet with doctors. Luke sat in on the meetings and neatly summarized the potential dangers of a transplant.
"A really bad rejection or a really bad infection," he repeats in a cheerful sing-song of a voice.
The decision was painful for his parents, especially since their son was leading a relatively normal life.
"It's a big decision to put your son through a major surgery like that," Mark said. "You can manage the disease as well as Tracy did, but there is a cumulative effect.
"We had to weigh the anxieties of, 'When I'm gone, who is going to care for him quite as well as I do?' " Mark continued. "That outweighed the risk of the surgery."
Doctors said Luke would be a good candidate for a transplant, and his name was put on the list.
At 1 a.m. on Monday, Oct. 16, the phone rang in the Brassards' home. The day before, Luke and his younger sister had been baptized, and Tracy's parents were visiting from out of state.
Within four hours Mark, Tracy and Luke were on a chartered jet to Pittsburgh, trying to make the six-hour window they had been given to reach the hospital where the surgery would be performed.
Tracy's parents stayed with his little sister, Alyse.
The timing was perfect.
"It was God's plan," Tracy said. "Too many things took a lot of the stress out of (wondering), 'Is this our time?' My parents being here. The baptism."
'A miracle'
Luke came through the surgery and its aftermath without serious complications. Two weeks after the transplant, he came home, a large scar crossing his belly like a peace sign.
"Do you want to see my scar?" Luke offered, hoisting his T-shirt to show off the purple train tracks.
He will also need to take medicine to keep his body from rejecting the new liver.
The surgery was painful and frightening. So was seeing Luke so miserable for the first week that "he didn't even crack a smile," Mark said.
But it was worth it.
"It was a couple of days," Mark said of the surgery and its immediate aftermath. "We dealt with that metabolic disorder for 10 years."
And the Brassards are now happily dealing with the fun of planning a Christmas feast for the first time as a family with no fears.
"It's just nothing short of a miracle," Tracy said.
"It still hasn't really hit us, how it's going to change our lives," Mark added.
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