Sooke baby struggling with rare illness

Ethan is only six months old but in his short life span he has undergone six surgeries.

Ethan is only six months old but in his short life span he has undergone six surgeries.

His parents, Kelly Steenbergen and Scott Cameron, who have no other children, have spent most of the last six months in hospital rooms trying to figure out what is wrong with their son.

When he was just two-months-old he began experiencing breathing complications and had no appetite. He was diagnosed with Congenital Lobar Emphysema, a rare non-hereditary birth defect with no known cause.

He spent six days in hospital where he was monitored and fed. In October he had his first major surgery to remove the upper lobe of his left lung. He did well and was sent home but by November he was once again in hospital for three weeks. Pain and difficulty breathing continued to plague the little guy and on Christmas Day he was operated on again to repair 10 tiny leaks in his lung from the original surgery. Chest tubes and surgeries became commonplace as were weeks in Vancouver while Ethan was in Children’s Hospital trying to heal. His surgeries may not be over yet.

Easter Seal House has been home to Kelly and Scott but their time is running out. Parents are allowed to stay for 30 days without paying but after that the cost goes to $40/day for the two of them.

Kelly is on maternity leave and Scott works in the logging industry. Both are longtime Sooke and Jordan River residents.

When spoken to on January 21, Kelly said, “He’s doing okay today, he still has his chest tubes in, but things are looking up. He’s a tough little guy. It’s amazing that with all he’s gone through he is still smiling.”

She said the family is doing good with the help of the amazing hospital, doctors and other parents going through medical issues with their kids, as well as the support of family and friends.

“We’re not alone,” she said.

“I heard they were getting strapped,” said family friend Diane McNeil. “They will be over there for quite a while yet.”

Knowing this McNeil is organizing a fundraiser for the young family to help them cope with the expense of travel, medicine and accommodation in Vancouver.

An auction will be held at the Sooke River Hotel on February 12 at 7 p.m.

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