Tuan Bui gently lifts his daughter Leila from her wheelchair into her hospital-style bed. Her room is alive with pastel-coloured stuffed animals and hand-drawn cards that marked her 12th birthday on Dec. 6.
Her eyes remain closed and her heart-shaped mouth is slightly parted as her father whispers in her ear: “OK sweetheart, I’m going to move you to your bed now.”
After a nurse does stretches with Leila, Tuan and his wife, Kairry, will take Leila to Torquay Elementary school, where her younger siblings, six-year-old Jace and nine-year-old Myla, will perform a Christmas concert.
It’s difficult to know Leila’s level of awareness, but her parents believe the concert will be stimulating for Leila, who always loved classical music.
Thursday will mark one year since the morning Leila, then 11, was struck by an SUV as she crossed Ash Road at a crosswalk in front of her Gordon Head home. The impact left her severely brain injured and she has been in a near-comatose state ever since.
After multiple surgeries and six months in hospital, Leila returned home, where she requires around-the-clock care.
Kairry and Tuan have not given up hope that one day, the bubbly, bright and creative little girl they knew will come back to them.
Kairry says that in the weeks after the crash, neurologists at Victoria General Hospital “didn’t give us a lot of hope.” They were blunt in warning of the possibility that Leila’s cognitive ability would never improve. “They wanted us to give up on her, basically.” She remembers one doctor saying: “If it was me, I couldn’t do it. I wouldn’t be able to live with seeing my child like that.”
“My husband and I have hope that she’s young, she could recover. I know it’s not going to happen instantly,” Kairry says, but she’s willing to wait.
“We pray that she wakes up one day and comes back to us,” Tuan says. He cites the story of Victoria Arlen, an American girl who, at age 11, developed two rare medical conditions that left her in a vegetative state. Doctors had little hope of her survival, but after nearly four years, she began to eat, speak and move, going on to win four medals in swimming at the 2012 Summer Paralympics in London.
Sitting in the living room, looking at the twinkling family Christmas tree, Tuan remembers that two days before the crash, Leila helped decorate the tree, carefully placing her favourite ornaments, a gold owl and plush bears, onto the branches.
While Leila won’t be tearing open Christmas gifts with her three siblings this year, Kairry and Tuan are just grateful the entire family will be together.
“This year, it means a lot to have her home with us,” Tuan says.
In the early hours of last Christmas, Kairry and Tuan sat nervously outside the operating room at Victoria General while Leila underwent a craniotomy, a surgery to remove part of her skull to relieve the swelling in her brain. It was one of nine surgeries while she was in the hospital’s pediatric intensive-care unit.
Leila spent two months undergoing intense rehabilitation therapy at Sunny Hill Health Centre for Children at B.C. Children’s Hospital in Vancouver before she returned home in June.
Leila breathes through a tracheotomy tube and eats through a gastrostomy tube. She has to be turned in her bed every three hours to prevent bed sores.
Her health needs mean the family is approved for around-the-clock nursing care, but there’s not always a nurse available to fill every shift. That leaves Kairry and Tuan to step in as caregivers.
Both parents acknowledge that their dedication to their injured daughter has meant that their other three children, Quynh, Jace and Myla, have made major sacrifices.
As a thank you, the couple recently bought the kids a puppy, a hyper little maltipoo named Benji.
Both parents work for the B.C. government and Kairry has been given time off work and the opportunity to work part time from home.
Sometimes, Leila makes gestures that convince her parents she knows what’s going on around her. She used to bob her head back and forth when she was uncomfortable or grind her teeth when she was unhappy.
Now, she shakes her head from side to side, but Kairry says they don’t yet know what that means.
Leila’s parents and her 14-year-old sister, Quynh, read her books she used to love, including Wonder, a children’s novel by R.J. Palacio about a boy with a severe facial deformity. It was the last book she read before she was injured.
“I think the book personifies who she is and her character,” says Tuan, pointing to Leila’s generosity and strength.
“Leila is so strong,” Kairry says. “She fought to be here.”
Sitting in her wheelchair next to her parents, Leila wears a grey cardigan, grey and black striped tights and pink fuzzy socks. Her black hair is neatly French-braided into buns at the back of her head. Stray hairs wisp across her forehead.
Tuan wipes his daughter’s face with a purple washcloth, then tenderly strokes her cheek with the back of his hand.
Two Sundays ago, 17 classmates from Arbutus Middle School filled the house to celebrate Leila’s 12th birthday.
Leila had dreams of one day opening a spa with an attached bakery, so the home was filled with the smell of baked goods and tables were covered with nail polish and facial masks. As a birthday gift, her friends bought her a purple fleece blanket personalized with her name, which now covers her bed. Homemade birthday cards hang from a string on the wall.
“I just wanted to make the day special for her,” says Kairry.
“We just wanted her to have a normal birthday,” says Tuan, sitting close to his wife on a leather ottoman.
Leila stayed awake — with her eyes slightly open — for the whole party, which her parents took as a sign that she knew her friends were around her.
Her friends have dropped by for visits ever since Leila’s return home in June. The girls gather in Leila’s room, tell her gossip from school and talk about the latest music videos or YouTube stars, Kairry says.
“Just seeing her friends catching up with her, it’s an encouraging sign that maybe she’ll make her way back. And she won’t have missed anything, because her friends have kept her up to date.”
Once a week, Leila attends Victor School, a school for children with special needs such as autism or serious physical and medical disabilities. Teachers offer programs such as music therapy and pet therapy for Leila and her 13 classmates.
Leila is the only child who is unable to participate, but her parents think it’s important to give her a routine and surround her with people.
A 21-year-old North Saanich woman, Tenessa Rayann Lyric Nikirk, has been charged with dangerous operation of a motor vehicle causing bodily harm in connection with the crash.
Tuan says even a year later, he and his wife are still finding out things about their daughter, sometimes the secret goals and aspirations that only close friends know or are written in the pages of a journal. It’s heart-breaking but at the same time inspiring, her father says. “There’s so much potential in her. I know everyone thinks their kid is special, but Leila is such an amazing kid. It makes me want to do anything I can to bring her back, so she can fulfil her dreams and her vision in life.”