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'A family of 5, down to 2': Kevin Lewis Sr. loses 3rd family member to same disease

A local actor and writer is mourning the recent loss of his second son to the same disease that previously took his wife and other son.
A man wearing a baseball cap and forest green jacket stands outside the CBC studio in St. John's.
Kevin Lewis Sr., a local writer and actor, is mourning the loss of another family member this week to Idiopathic Pulmonary Fibrosis. (Geoff Bartlett/CBC)

A local actor and writer is mourning the loss of his second son to the same disease that previously took his wife and other son.

Actor and writer Kevin Lewis Senior loses another family member to a rare lung condition.

Kevin Lewis Sr. has now lost three members of his immediate family to Idiopathic Pulmonary Fibrosis — an incurable disease — which causes the lungs to lose elasticity, with a lung transplant being the only option for survival.

The lungs that Kevin got made a big difference in his life. So I would ask people to sign their donor cards.- Kevin Lewis Sr.

Lewis's brother-in-law and also died from the same disease, and his sister-in-law also has it. 

After losing one son and his wife to Idiopathic Pulmonary Fibrosis, he travelled to Toronto with his oldest son Kevin Jr. so he could get a double lung transplant. He also had a liver transplant.

"He got basically 17 years of life because of that donor," he told CBC's St. John's Morning Show.

"He would not have lived past another week if somebody had not have donated the organs."

The extra 17 years allowed Kevin Jr. to continue doing what he loved, including fishing and traveling to Japan, France and Argentina to compete and carry the flag in the World Transplant Games.

A new way of life

Lewis said that even after tragically losing so many members of his family to the same disease, he still tries to carry on as best he can.

"I never say 'Why me?' but 'Why not me?' You never get over it, but as time goes on, you sort of adjust to that way of life," he said.

"I don't think you're going to run into anybody who hasn't gone through some sort of family trauma with some kind of disease."

Lewis doesn't think he could ever truly get over the loss of their wife and children, but that with time he has been able to somewhat adjust to his new life.

"We were a family of five, and now we're down to two," he said.

"There's not a day goes by that I don't think about Peggy, Chad and now Kevin."

Son to be remembered through play

A memoir Lewis wrote about Kevin Jr.'s lung transplant has recently been turned into a play, which will premiere at the Arts and Culture Centre's Barbara Barrett Theatre next week.

The Rose Kennedy Blues is scheduled to be shown next Wednesday and Saturday, which Lewis said will not be postponed — despite the fact that Kevin Jr. only passed away on Monday.

"We talked about whether or not to go on with it, and I thought about what Kevin wanted," he said.

"There's no way he would have wanted it stopped."

In the meantime, Lewis said without the lung transplant, he never would have been able to spend the years with his son that he did.

He urges everyone that hears his story to consider donating their own organs so others can have a new lease on life as well.

"The lungs that Kevin got made a big difference in his life," he said.

"So I would ask people to sign their donor cards."

Corrections

  • A previous version of this story stated Lewis's sister-in-law died from the disease. In fact, his sister-in-law has the disease, but has not died.
    Sep 24, 2015 6:41 PM NT