Kaiya McEwen will be turning 18 months old on Thursday. The toddler is quite small for her age, except for her big belly - a reminder of her condition: alpha 1-antitrypsin deficiency.
Kaiya is now on the waiting list for a liver transplant, said her grandmother, Danette Stranan, from the family's Pender Island home.
When Kaiya was diagnosed with the condition, which can cause liver disease, her parents, Rita McEwen and Josh Westlind, were told it could be managed through medication.
But Stranan said the family was told she needed a new liver during a visit to B.C.'s Children's Hospital in April. Kaiya was diagnosed at the age of 12 weeks.
"She's a real trouper," Stranan said. "She's been through all sorts of tests, pokes and been put out and she's still a cheerful girl."
Although the condition is hereditary, Stranan's sister, Jane Harrison, is being tested as a possible live donor.
"We're keeping our fingers crossed," Stranan said. Harrison will travel to Edmonton next week for the final test to see if a piece of her liver could be given to Kaiya.
Stranan said the illness has been hard on the whole family, including Kaiya's older brother Evan, who turned eight on Tuesday.
"It's very stressful because she's been in and out of the hospital so much," Stranan said.
Fundraisers including festivals, barbecues and bottle drives on Pender and Saltspring Island have raised more than $10,000, which Kaiya's family is using for groceries and rent.
The David Foster Foundation also has helped the family by paying for flights and accommodation when they flew to the children's hospital in Edmonton, where the transplant would take place.
Although a registered organ donor for years, Stranan said the importance of signing up has never been so clear to her.
"I encourage anybody to sign up for the national registry," she said. "Our bodies can be used to help out other little ones."
Donations to Kaiya's family can be made to Danette Stranan's bank account through any HSBC branch.
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