Jeb Wallace-Brodeur / Staff Photo Five-year-old Drew Bernier sits with his mother, Marie, father, Josh, and new baby sister, Sophia, at their home in Barre on Friday. Drew has been diagnosed with a rare chromosomal disorder and needs a bone marrow transplant.
While Marie Bernier was in the hospital after giving birth to daughter Sophia, in early February, she got a call from her husband, Josh.
The couple’s 5-year-old son, Drew, had developed a rash on his chest and arms, and Josh Bernier was concerned it could be contagious and should be checked out before the baby came home.
They quickly learned it was actually something far more serious, called petechiae, spots that result from bleeding under the skin and can indicate a number of conditions, including life-threatening ones.
Tests determined that Drew is missing one of his chromosomes from his blood cells and has an extremely rare condition known as monosomy 7, which puts him at high risk of developing a fast-spreading cancer of the blood and bone marrow, called acute myeloid leukemia.
“AML in children is life-threatening,” his mom said Friday during an interview at the family’s home in Barre. The illness will “spread like wildfire” in children, and had it not been for the couple’s concern about bringing Sophia home with Drew having what they thought was just a rash, they may not have found out so early.
“His little sister Sophia literally saved his life,” Marie Bernier said, her eyes glistening with tears of gratitude.
Drew’s bone marrow is defective, and the only option for treatment is a bone marrow transplant. It must be preceded by chemotherapy to kill his own marrow first, then after the transplant he faces months of protection from infection — first in the hospital, then at a Ronald McDonald House in the Boston area. Once they return home, it will be between six and nine months that Drew will not be able to go to preschool or start kindergarten, because he won’t have any immune system for a while. No one outside the family will be able to come into the home during that time, although he’ll be able to play with friends outside, Marie Bernier said.
There have been some very dark days in the past month, she said, but the love and support from family and the whole community has been life-affirming. She said her sister, Christine Elwell, quickly launched a fundraising campaign online that brought in $20,000 within days.
“My family and I are absolutely amazed by the outpouring of support this community has shown our family in such a short period of time,” Elwell said Friday. “We raised more than half of our original goal ... of $20,000 in less than one day.”
As of Friday afternoon, just over $30,000 had been pledged toward the current goal of $50,000.
Both Marie and Josh Bernier will need to be away from their work for an extended period; she is on leave from her job at the Vermont Arts Council, and he runs his own business, College View Dairy, delivering local milk to stores throughout the region, said Marie Bernier. Their expenses for Drew’s treatment and recovery will include insurance, travel and lodging.
Along Josh Bernier’s milk delivery route, customers and their employees have joined the effort to raise money to help the family through the coming difficult months.
At Dente’s Market in Barre, a nickel from every gallon of milk sold will be going to help Drew. Donation jars have appeared all along the milk route. In stores and shops throughout the region there are ribbons, T-shirts and soon silicone bracelets, all orange, the color signifying leukemia, said Marie Bernier.
An employee at another of the stops on her husband’s milk route, Lawson’s Store in Websterville, has taken on the volunteer role of ordering and distributing the merchandise to assist with the fundraising, Marie Bernier said. Her name is Tracie Wright. Bernier said she has never met Wright.
A complete stranger, a woman named Tiffany Stacey, contacted Marie Bernier on Facebook and told her that her late mother, Marie Hull, had had a bone marrow transplant that prolonged her life. She died in 2012. The memorial gifts given to the family in her mother’s memory are being donated to the Berniers.
“I’m so thankful that I come from a small community like this, because the amount of support is just amazing,” Marie Bernier said. Both her husband’s and her own familiesand their friends have been incredible, and without that support they could not have gotten through the past month and a half, she said.
What Drew has is so rare, his mom said, that he will be studied. He is already a patient at the Boston Children’s Hospital, where he will soon have the transplant.
The couple have explained what’s ahead for him, and he told them he is not afraid and “will be a big, brave boy” about it, Marie Bernier said. “He doesn’t understand why this is all happening.”
As a still-healthy child, he is expected to bounce back, and his chances for a full recovery are 90 percent, she said they’ve been told.
A matching donor is being sought now; both his parents have been tested and have a 15 percent chance of being a match for their son. The family was told that Drew’s bone marrow is extremely matchable, and when the doctors did a preliminary search through the bone marrow registry, they found roughly 1,000 potential matches for him, she said.
“There is a lot of hope,” she said.
People can receive updates from the family on Drew’s progress and find out how to help at www.caringbridge.org/visit/hopefordrew.
Contributions can be made at www.gofundme.com through the Drew Bernier family fund. Checks can be sent to Josh and Marie Bernier, 4 Elmore St., Barre, VT 05641.
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