Parents of 5-Year-Old Who Died from Asthma Encourage Cornea Donation: 'It Puts Purpose in the Pain'

Levi and Jennie Lusko are working with SightLife, the world's largest nonprofit eye bank, to raise funds for cornea transplants worldwide: 'It puts purpose in the pain that we went through'  

Lenya Lusko
Lenya Lusko. Photo: Kelli Trontel

While Lenya Lusko was visiting her grandmother on the evening of December 20, 2012, the 5-year-old suffered a severe asthma attack. Despite the efforts of her family and health care providers, she quickly passed away.

"It was so horrible," her father, Pastor Levi Lusko, tells PEOPLE. "We were in shock. You never in your life think that this is going to happen to you."

When they got home from the hospital, Levi and his wife, Jennie, founders of Montana's Fresh Life Church, received a call from the facility asking if they would consider donating Lenya's organs.

The couple said yes; "we knew it was the right thing to do," says Levi, and they donated Lenya's heart valves as well the corneas from each eye, which would give sight to a man and woman. "It felt like a chance that something good can come from this," he says.

Left to right: Lenya, Jennie holding Daisy, Levi, Alivia in 2012
Lenya Lusko, center, with her parents, Jennie and Levi, and siblings in 2012. Kelli Trontel

It's taken many years for the couple to speak publicly about their tragic loss. But now the Luskos — parents to three other daughters and a son — are focused on raising awareness of the importance of cornea donation (November is national eye donation month), and raising money so that more people can receive the gift of restored vision.

They are working with Seattle-based SightLife, the world's largest nonprofit eye bank, which helped them with Lenya's cornea donation.

"I feel like it puts purpose in the pain that we went through, because when you go through such grief, you feel that weight on your chest that you don't know if you'll be able to breathe again," says Jennie. "Knowing that we're helping someone puts a purpose to it."

Left to right: Alivia, Lenya, Jennie holding Clover, Levi, and Daisy in 2012
Lenya, her mother, Jennie, and siblings. Kelli Trontel

In September, when Levi published the children's book Roar Like a Lion, in honor of Lenya (her name means lion in Russian), he reached out to his 322,000 followers on Instagam @levilusko, as well as those on Twitter and Facebook, and raised over $100,000 for Sight Life, which says the money will be used to help 40 people receive donated corneas.

"We just didn't want to release a book and tell people to buy the book," says Levi. "We wanted to do something good for the world with it."

The couple, who live in Whitefish, Montana, will continue these good works with a year-end fundraiser through their church, hoping to raise another $25,000 for SightLife, with an emphasis, Levi says, on benefitting people outside the United States who need a cornea transplant and can't afford one.

The money, which will be raised online through their church website and Instagram, is part of the couple's goal of raising $250,000 for SightLife to help about 8,500 people receive a new cornea, medications to stave off blindness and educational programs.

"You don't get to pick what you go through in life, but you do get to choose how you face it," says Levi. "I think it's helped us to grieve, and continue to have closure and healing."

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