Kaiya Westlind McEwen

VARIETY is the price of life

On the road to recovery by the donation of liver tissue and by donations from a multitude of charities, including Variety

On her first birthday, Kaiya Westlind McEwen was so sick she couldn’t eat her birthday cake. Upon turning four earlier this month, the vigorous Campbell River preschooler was able to have her cake and eat it, too.

Kaiya, diagnosed as an infant with a genetic condition that threatened to destroy her liver before age 2, was put on the road to recovery by the living donation of liver tissue from her great-aunt, and by donations from a multitude of charities and fundraisers, including the Variety Show of Hearts Telethon

The telethon returns this weekend for its 49th year on Global BC.

“One of the first was Variety, because they’re connected to B.C. Children’s Hospital,” said Rita McEwen, Kaiya’s mother. “I was so concerned with being Kaiya’s primary caregiver that a social worker was set up to handle filling out all the forms. I was really bad about it, but (Variety) was really wonderful. They never made it a problem.”

The family — including Kaiya’s father, Josh Westlind, and older brother, Evan — had enough problems on their hands when the baby girl began exhibiting health issues at just two months of age.

Traveling from their home on Salt Spring Island in 2011 to visit a variety of specialists, they finally learned Kaiya was stricken with Alpha-1 antitrypsin deficiency disease, a genetic condition which can lead to lung problems in adults and liver damage in victims of any age.

This led to a family odyssey over the next year and a half from Salt Spring Island, to an apartment near BC Children’s Hospital — where Kaiya was admitted for weeks at a time — to the Pender Island home of her great-aunt, Jane Harrison, and to University of Alberta Hospital in Edmonton for her eventual transplant in September, 2012.

All of this came with a cost.

“Variety was able to help by providing funding for special feeding supplies, formula, medication and meal vouchers and groceries while the family was by her side at an out-of-community hospital,” said Bonnie Allan of Bridge Communications. “What needs to be explained is that all necessary medications are not covered by our medical health care — for transplants, and even for those dealing with cancer and other (diseases).”

Four-year-old Kaiya Westlind McEwen, centre, enjoys a quiet moment with her family, from left, brother Evan, father Josh Westlind and mother Rita McEwen.

In addition to funding from Variety, the family also received a generous donation from the foundation of renowned composer David Foster, and more money from a multitude of local fund-raisers on Pender and various communities on Vancouver Island and the Lower Mainland.

“There were so many, I can’t name them all,” said Rita.

Westlind’s mother and his aunt, Harrison, even donated the proceeds from the sale of the store they operated on Pender Island. And Harrison would eventually make the biggest donation of all.

While Kaiya was put on a list for a suitable post-mortem donor, family members were put through a battery of tests to determine their suitability as a “living donor.” Harrison proved to be the perfect match. So, by late summer of 2012, with Kaiya now requiring a feeding tube directly into her stomach and her liver nearing end-stage failure, she and Harrison were flown Aug. 14 to the Children’s Stollery at UAH in Edmonton to await surgery.

The procedure involved cutting out a small portion of Harrison’s liver to implant in the baby.

“It’s like a starfish,” Westlind said of the liver. “It’s the only organ in the human body that regenerates itself.”

A month later, donor and recepient were on the road to recovery. It was a road Kaiya’s family was unsure she would get to travel before the life-saving transplant.

Kaiya is still on anti-rejection medication, which can lower immunity to common childhood illnesses. But while the youngster has suffered colds and a recent bout of flu, her system has been able to fight them off.

And she now looks and behaves like any other vigorous four-year-old, batting leftover birthday balloons to keep them aloft while running around her home and showing an almost uncanny skill with a hula hoop.

“Of course I have concerns,” said McEwen, who works at the Campbell River pre-school Kaiya attends. “When we first got back from Edmonton we were in the hospital for anything she showed symptoms of. Being the mom of a child who went through that, I feel it was justified.

“But her system’s adjusted. She’s just like any normal pre-schooler.”

Kaiya Westlind McEwen, 4, spins a hula hoop at her family’s Willow Point home. She has become a “normal pre-schooler” since undergoing a liver transplant at age one with help from the Variety Telethon and other donors. J.R. Rardon/Campbell River Mirror