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Megan LaVictoire expects that one day this summer, she and her husband, D.J, and their 10-month-old son, Presley, will drive from their North Bay home to adjacent Holy Cross Cemetery, advance out their king-size batt and adore a barbecue alongside the grave of Presley’s earlier sister, Lauren.
The two youngsters never met — Presley was built-in aftermost September, about a year afterwards Lauren died — but the quilt, fabricated from clothes she wore during a activity that lasted beneath than four years, will advice Megan and D.J acquaint Presley about his sister.
There’s the T-shirt she got on her Make-A-Wish Disney cruise, six months afore she died. A bathing accouterment serves as a admonition of her adulation of baptize — she had a appropriate abutting arena by which she could cautiously swim.
There’s a Cat-in-the-Hat Thing 2 T-shirt. Her best friend, Macy, wore the analogous Thing 1 T-shirt.
There are dresses with buttons and zippers that Presley can comedy with, and added clothes and accessories — pajamas, a hat, socks — that, combined, accord some clues about who his sister was. Anniversary piece, says Megan, has a story.
The base is fabricated from accepting and added blankets Lauren used. The attenuated blooming bound came from the absolute captivated about her aback she died.
Megan and D.J will add capacity that their daughter’s apparel can’t show. Lauren couldn’t airing or talk, but cooed, like a newborn. They’ll acquaint Presley about her albino beard and ablaze dejected eyes — eyes that from the day she was built-in could alone anticipate ablaze and dark. Did she apperceive how her bright smile lit up a room?
Lauren LaVictoire. Courtesy of Megan LaVictoire
Lauren Chantal Tamara LaVictoire was built-in in Calgary on Dec. 12, 2012, and admired music. “Every night,” Megan ability acquaint Presley, “she listened to a CD — any CD — but she admired it loud.
“She admired loud music and loud crowds and loud kids. She absolutely would beam aback kids would cry. She was the funniest, best adjustable adolescent that you would anytime see.”
Lauren was aloof a few months old aback Megan and D.J noticed that things weren’t absolutely right. Lauren didn’t accomplish eye contact, and was missing added milestones. Maybe, they thought, she artlessly bare added time.
When Lauren was six months old, the ancestors confused to Ottawa, to be afterpiece to family. Two weeks later, Lauren was rushed to CHEO afterwards she afraid on a banana. A assistant there, acquainted Lauren’s delayed development, alleged a paediatrician. It was appropriate Lauren be accepted for added tests.
“We were both shocked,” recalls Megan. “We anticipation our babe was activity to abound up and be advantageous and happy, and aural three weeks we were told that she was blind, that she had a attenuate abiogenetic ataxia — leukodystrophy — that she may never airing or talk. That she would not be a archetypal adolescent at all.”
When he heard the news, D.J fell to his knees and wept.
Tests continued: there are added than 40 varieties of leukodystrophy, and it took about two years to actuate that Lauren suffered from H-ABC leukodystrophy — hypomyelination with decline of the basal ganglia and cerebellum. At the time of her diagnosis, there were alone about 100 accepted cases in the world, and none in Canada.
D.J, Lauren and Megan LaVictoire. Courtesy of Megan LaVictoire
In the meantime, it was apparent that she was silently aspirating. She had a gastronomy tube amid to advice augment her. She suffered seizures, which for a while were managed. There were improvements and setbacks, but ultimately too abounding of the latter. Lauren underwent agriculture studies and physio- and anatomic therapy. Things seemed OK until she was two, aback Megan and D.J were told their babe was actuality referred to Roger Neilson House to see if she able for booze care.
“That’s not article you would anytime appetite your adolescent to authorize for,” says Megan. “It was a shock, because at the time we didn’t apperceive her diagnosis. We knew she had leukodystrophy but we didn’t apperceive what type. And abounding accouchement who accept leukodystrophy alive to be teenagers and adults. But I assumption that was not in the cards for Lauren.”
Lauren’s action worsened about her third birthday. She began accepting added common seizures. She didn’t deathwatch up for a few canicule afterward one decidedly bad one. In May, 2016, her acquittal visits angry into pain- and symptom-management ones; weeklong stays anniversary month.
Megan and D.J were asked to ample out Lauren’s dejected form, a check about such end-of-life apropos as resuscitation. They had completed a agnate anatomy aback she was initially admitted, but at the time it aloof seemed like paperwork. This time, it accepted their suspicions that Lauren’s activity was bottomward to its close.
“This was our reality,” remembers Megan. “They anticipation she maybe had a year.” The abutting brace of months were a becloud of basic for the inevitable.
“She affectionate of went backwards. Like you apprehend them not to nap at three anymore, but she went aback to actuality a newborn. She was sleeping added than she was awake. We still couldn’t get her seizures beneath control, but it was aloof article we lived with. We fabricated her adequate and happy.”
In backward October, Lauren developed what appeared to be a simple abscessed throat. Aback it didn’t bright up, Megan took her to Roger Neilson House. Aback she woke up the afterward morning, Lauren seemed abundant better. “She was like a archetypal child,” remembers Megan. “She was dark but it was as if she was attractive at me. She could see me, and now I anticipate it was her aftermost bit of life, of energy. She was animated like she hadn’t in some time, as if she was acquainted of her surroundings.”
Megan put Lauren bottomward to go appear a ancestor abutment group. Aback she returned, Lauren was asleep. She never woke up. Lauren LaVictoire died two canicule later, at about 8 p.m. on Nov. 3, 2016.
The brace backward with her overnight, again agitated her to the advanced aperture of Roger Neilson House, area a assistant took Lauren over to CHEO for an autopsy. A band of Roger Neilson House staff, volunteers, patients and families formed an honour guard.
Today, the batt — one of the bequest mementoes that Roger Neilson House makes accessible to patients’ families — charcoal the best adored to Megan and D.J. It took Megan weeks to array through Lauren’s clothes. “It brings up a lot of memories and emotions,” she says. “It was mentally exhausting.”
Lauren LaVictoire in her Thing 2 T-shirt. Courtesy of Megan LaVictoire
Anne Donald, the Roger Neilson House advance who fabricated the quilt, additionally captivated assimilate Lauren’s clothes for a while afore acid any of the pieces. “Just in case bodies change their mind,” she says.
She’s fabricated seven quilts for patients families so far, on top of the estimated 100 others she’s fabricated over the years. Anniversary one takes about two months to complete, and aback they’re finished, she artlessly leaves them at Roger Neilson House for families to aces up; she feels it’s bigger not to be there aback they aboriginal see them, so that they don’t feel they accept to acknowledge to her. But she loves authoritative them. “It’s so acceptable to apprehend of the joy they bring.”
For Megan and D.J, and conceivably one day Presley, the batt serves as a admonition that Lauren is never far away.
“It’s a anamnesis for us,” says Megan, “a anamnesis of her accomplished life, of all the apparel and contest that she was a allotment of. I could acquaint you every little allotment of accouterment and what it was. All of her memories are in this quilt. It was article that we could bundle up to afterwards she anesthetized abroad and feel like we were actuality captivated in a hug from her.
“I feel that this batt has healed both D.J and I. We appetite (Lauren’s) anamnesis to alive on, and we appetite her little brother to apperceive about her. This is article will be able to appearance him and allocution about the memories of what we did with her.”
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