A 12-year-old Port Coquitlam girl unable to go to school because of fears her medical condition makes her vulnerable to COVID-19 has found a new sense of purpose — on Etsy.
Maliyah Chung lives with spinal muscular atrophy, a rare form of ALS found in children which leads to progressive muscle wasting, and if left untreated, is among the most common genetic causes of infant death, according to the U.S. Department of Health and Human Services.
Last summer, as thousands of children were preparing to head back to school after many months off, Maliyah’s family made the hard calculation that returning to school would be too dangerous.
“Just a simple cold could lead to something more. Complications could occur,” said Maliyah’s mother Farah Hirji. “There was so much uncertainty. It was hard to know whether she would be safe at school.”
When Maliyah’s respirologist confirmed she was at a higher risk if she caught the virus, Hirji, who is also a teacher, decided to stay home from school with her daughter.
The two have been homeschooling ever since.
At times, school at home has been hard for Maliyah, and the 12-year-old former student at Citadel middle school misses her friends most.
“Sometimes I go on walks. I just face Zoom and FaceTime them,” she said. “I miss them.”
But homeschooling has also opened up an unexpected outlet when the mother and daughter took on a program that allows the middle school student to pick her own areas of study.
“She chose her topics. One of them was financial literacy. It sort of organically happened,” said Hirji.
From a young age, Maliyah had taken to beading, an activity that she increasingly excelled at as she lost control of her muscles but remained mentally sharp. Now at home, she started to create a vast collection of bracelets and lanyards.
When she visited her doctors and physiotherapist, she’d bring them along and hand them out: soon she had given the handmade jewellery to all the teachers at her old Castle Park elementary school and to many of the staff members at Canuck Place and BC Children’s Hospital.
The compliments rolled in, with many posting the question, “Why don’t you sell them?”
“She thought, ‘Oh, OK. Maybe I should start up a little Etsy store and see how it all works,’” said her mother.
Soon Maliyah had partnered with an SFU student who she met while she was volunteering at her physiotherapist.
‘KIDS HELPING KIDS’
Since launching the Etsy store, Maliyah has sold 150 pieces of hand-made and often tailored jewellery.
“I didn’t really expect it to blow up in the first week. I thought we’d just sell a couple to people we know,” Maliyah said.
From the beginning, the plan was to give back and donate a portion of the profits to six separate charities for six months straight — or as her mother puts it, “It’s kids helping kids.”
In February, Maliyah donated $150 to Love for Lewiston, which works to raise funds for treatments, and eventually finding a cure, for spinal muscular atrophy.
Many of the charities slated to receive donations over the coming months have supported the girl over her young life, and this month, she’s giving back to Canuck Place. But she’s also helping out causes close to some of her friends’ hearts, including one friend who suffers from a brittle bone disease and another trying to raise money for artificial hands that cradle premature babies in incubators at Royal Columbian Hospital.
Their plan is to donate $1,000 in total.
“We want to donate as much as we can,” said Maliyah. “The more we make, the more we donate.”
A THERAPEUTIC DISTRACTION
The intricate designs have been a creative outlet for the homeschooling 12-year-old, but they’ve also served as a distraction from the fact she can’t be at school with her friends.
“There are so many kids that are struggling right now with so many things that are going on,” said her mother. “It’s been really therapeutic through this time.”
“It’s a good way to give back when you’re just at home and waiting for this all to be over.”