Ontario boy with immunodeficiency disorder improving after L.A. treatment

Ontario boy with immunodeficiency disorder improving after L.A. treatment

Kathleen Quiring spent a couple of weeks at home after giving birth to her son Felix. After a routine home birth, she could hold him in her arms, kiss his forehead, touch his soft skin.

But that normalcy soon ended for the Leamington, Ont., family when doctors diagnosed Felix with a rare genetic disorder that wiped out his immune system.

After just two weeks, Kathleen and her husband Ben Quiring moved their son to a hospital in London, where they would spend the next five months.

Mom and dad could still touch Felix, but they could only do so after putting on a pair of rubber gloves. Visiting him in a sterilized room, they also had to throw on gowns and wrap their faces in masks.

"We basically lived in his room during that time, but no kissing, no snuggling — just through the mask and the gloves and the gown," she told CBC News. "I had to stop breastfeeding at that time, which had been a really meaningful part of our contact before then, so it was a really big adjustment."

That's when the family learned the details about severe combined immunodeficiency, the same disorder that became widely known in the 1970s when it caused a young boy, David Vetter, to live for 12 years in a plastic, germ-free bubble.

Any contact with germs or viruses could lead to serious infections in children like Felix, which is why sterilization was key in those early months.

"I didn't realize, even when we feel healthy, how many germs, how many bacteria and viruses are running through us that can be harmful to someone with no immune system," Kathleen said.

Daughter had to leave house

She and Ben had to leave their daughter, Lydia, with her grandparents, while they stayed in London. Lydia came to visit occasionally, but the separation wasn't easy.

"Three year olds are pretty resilient," Kathleen said. "She handled it amazingly well."

Felix eventually came home in April. Out of precaution, Felix stays in his bedroom within a portion of the room taped-off by mom and dad. Everything behind that line is regularly sterilized.

Then came promising news. Felix was accepted into a medical trial program in Los Angeles. Doctors harvested Felix's bone marrow, then treated it with the enzymes needed to rebuild his immune system. They then put the bone marrow back in his body.

So far, the treatment seems to be working. The family is back home, even Lydia.

"Every time all four of us are in one room together, waves of gratitude wash over me," Kathleen said. "It's just so amazing to be together all under one roof."

The healing progress continues. Doctors say Felix might be able to interact with others as early as spring. That means he could be in the park for the first time, said Kathleen.

More importantly, though, mom looks forward to being able to kiss her son.

"I've always been a really big baby kisser, so when that was taken away from me last December, that was one of the biggest things that was a huge loss for me," she said. "For this entire year, that's kind of the thing I've been looking forward to. When I can kiss my baby again, things will feel more right again."